What it's really like to take Warfarin
8 December 2019
I've been taking Warfarin for nearly six months which, I think is decent enough amount of time to be able to bang on about is as though I know what I'm on about. Warfarin is seen as a pretty serious drug, taken and monitored incorrectly and the results can be fatal - cuts and bumps have to be taken a lot more seriously and in many ways it has a huge affect on the way a person lives their life but, it's also really not as bad as people assume.
What is Warfarin?
Commonly known as a 'Blood Thinner' warfarin is an anticoagulant - the biggest misconception with warfarin is that it thins blood, it doesn't. Warfarin works to slow down coagulation which is the rate in which blood clots, essentially it makes my blood less sticky which prevents clots from getting stuck in my body and causing a stroke or heart attack etc. The rate in which blood clots is measured by an INR (international normalised ratio) which is a number and best explained by describing the number as seconds; a normal person's INR is 0.9-1, that would mean that a normal person's blood would take 0.9-1 second to clot. Warfarin users have a target INR to reach based on their condition and needs, my target INR is 2.5 so my blood takes 2.5 seconds to clot - this is best demonstrated if I get a small paper cut or cut my lip; it really does take a lot longer to stop bleeding and scab over and often the scab is quite weak and thin and doesn't do as good of a job as someone with a normal INR. People with higher INR's often bruise more than Natasha Beddingfield, this, combined with being incredibly clumsy means that my legs are often covered in bruises but I'd say they're better than a stroke.
How is Warfarin taken?
Warfarin comes in small tablets of different sizes and colours - the colours determine the amount of warfarin in the tablet. A blue tablet is 5mgs of warfarin pink is 3mgs is and brown is 1mg. Everyone is different so the dose that someone else may need to reach the same INR as me can massively vary for example, I take 9mgs of Warfarin on a Monday followed by 8mgs for the rest of the week, I know someone with the same INR target who only needs 3mgs daily. One of the reasons why warfarin is used to commonly to 'thin blood' is because the dosage and INR levels can be manipulated so easily and this is why INR levels need to me be monitored quite closely to ensure that levels stay on target.
How are INR levels monitored?
By a small prick of the thumb or finger and a blob of blood being measured in a machine - the machine gives out the level reading and the nurse adjusts the dose accordingly. All Warfarin users in the UK have a yellow book that logs all the INR readings over time and the current dose. This book is also logged on your medical record so that specialists can identify any patterns and trends in levels. Warfarin users are also supposed to carry a medical card at all times so that in the case of an emergency people can be aware that you're more likely to bleed or be bleeding internally etc.
What affects INR levels?
it's also a misconception that taking Warfarin means a person has to closely monitor what they eat. Vitamins especially K which can cause blood to clot and C that can cause the opposite can have an effect on INR levels but only if eaten in massive amounts. The key is consistency and not massively changing your diet or taking supplements without checking your INR first and afterwards. Alcohol can be consumed in reasonable amounts - I can still get merry and end enjoy a few drinks without concern and if I ever to feel as though I've overdone it I can pop to the Warfarin clinic and get my levels checked (I've never had to this because despite being an idiot I'm quite responsible).
However, being a young-ish woman and having a toddler does come with it's struggles when it comes to taking Warfarin. Hormones have a huge impact on INR levels and menstruation always drops it to a 2 or 1.7 and picking up Fred's two-monthly stomach bugs have increased it to around 3-5 but knowing the causes for peaks and drops means that myself and the specialists can identify a pattern and not have cause for concern; an INR higher than 9 is a cause for immediate and concern and treatment anything below 6 is reason to be careful and stay away from sharp objects.
How is a high or low INR treated?
A high INR is treated with vitamin K - usually an injection in hospital, a lower INR would just be an increase in Warfarin dosage.
Periods and Warfarin?
Warfarin periods are worse than regular periods, it feels as though there is more is blood but essentially it is just that the blood is 'thinner' or less clotted than it would be without Warfarin. It also looks more like fresh blood and bright red which can sometimes be alarming, thankfully my periods haven't been too badly affected and last for 4-5 before stopping - there was one instance when I had a period at the same time as a stomach blood and I bled for 10 days but this was also due to my high INR of 5. When my INR when back down the bleeding stopped.
Warfarin side effects
Aside from the obvious bruising and bleeding I've also developed very dry skin since taking Warfarin, it's nothing that can't be managed with some decent moisturiser but can also be annoying when it comes to my lips and eyes. I've also got a very dry mouth, especially on the side affected by the stroke - this can be frustrating as water doesn't sooth it and I can sometimes feel as though I'm choking or develop mouth ulcers. The only side effect that gets me dows is my hair thinning, since taking Warfarin my hair has taken a hit and is very dry and brittle and much thinner than it was again, there's not much I can do about this and it's still better than a stroke.
When Warfarin is a ball ache
- Warfarin and pregnancy are not mates so if by some miracle I was to meet someone and want another baby to ruin my body I would have to let my consultants know and switch to Heparin injections as Heparin wouldn't reach the baby's bloodstream
- Warfarin has to be taken at the same time every day (6pm) in case the dose changes at a clinic appointment and can be amended immediately
- When I need a dentist appt. I have to let them know in case they want my INR changing to avoid as much bleeding
- Missing doses can be fatal, it takes three days for Warfarin to leave the body and without it it is very likely that I would have another stroke or instance of thrombosis.
Is Warfarin as bad as people think?
No, ultimately being on a medication that's preventing me from popping my clogs is ideal, the side effects can be frustrating but it doesn't have a huge impact on my life at all. It's frightening to be told that I need to be on a medication that is seen as so serious and somewhat dangerous for the rest of my life but it's really easy to manage and once a person's levels are consistently in range the amount of clinic appointments needed are lowered - I currently get seen every four weeks, when I'm fully in range I'll go to six weeks and then twelve. At some point I'll invest in an INR reader so that I can monitor my levels from home and adjust my dose accordingly but they are expensive.
Real honest parenting
22 November 2019
Mummy bloggers like to have you believe that they're being dead honest when they give away little secrets like 'wearing the same jeans for 4 days straight' and sometimes 'using Peppa Pig as a surrogate parent' but they're not letting you in on the real realities of being parent to a mini terrorist so here's some things that toddlers do that really, really get on your tits:
Sharting becomes normal - when your kid is on his third stomach bug in as many months you can bet your arse that you're on the same and this means that instances like sharting just become a normal occurance. If you're not covered in someone else's shit then it's your own and around this time of year you're probably wondering what it was ever like to pass a firm still and if you'll ever know of it again. Probably not hun, stomach bugs are more regular than my periods these days so thanks for that Fred.
Not eating - most kids go through a phase where they eat really well and you feel like you've struck gold on the kid-eating-veg competition but then suddenly and literally out of nowhere your child will decide that they no longer want to eat anything, a n y t h i n g other than toast and the mere suggestion of them considering something else is actual abuse and they would call childline if they knew what it was or how to.
Toddler socks vanish - If you think matching up adult sized socks is a fiasco imagine ones a fraction of the size, I probably get Fred a new pack of socks each month and within a week I am only left with odd socks. Odd socks is one of those things that makes my right eye twitch and heart race a little but thanks to this tiny human's tiny feet and tiny socks my OCD behaviours are being challenged daily leading me stop giving a sh*t what he looks like for nursery which brings me to my next point...
Dressing for nursery - There was a time when I'd plan Fred's outfits to make him look as cute as poss for nursery so that I looked like a dead good mum...then he started walking. Trousers soon became ripped at the knees, shoes were scuffed in a day and there was this one time when he was shoved in a ditch to play and was covered head-to-toe in mud so I stopped giving a shit. Nice clothes are saved for the weekends and occasions when I need to look like a dead good mum, most of the week is spent wearing ripped trousers and slightly too short tops because I will make the most of every item of clothing until he can physically no longer wear it.
Nicking your kid's food - Imagine this, you cook your little bundle of joy a classic meal of fish fingers, smiley faces and peas and as you serve it to him you think back to your own childhood and how much you enjoyed this grub. It's not your dinner time yet because you ate most of Greggs at lunch so you sit at the table with the child to be nice and chat and help them fill their little face with goodness only for them to take e v e r y s i n g l e pea off their plate, choke on your poison fingers and just suck on the faces. This brings on a range of emotions from concern for their malnourishment, disappointment that they can't just be a normal human and eat their dinner and anger that they don't know what a cracker of a meal they've been blessed with - this soon passes as you feed your emotions with the bits of food that haven't been choked on, on the floor or sucked....oh who's kidding, you eat the lot.
Dropping a swear word - Fred likes to copy words, it's cute until I start talking about his Dad and now we have to say that Daddy is a digger because that is absolutely what Mummy said and definitely wasn't dick.
Kerchinging when child benefit goes in - kid's are expensive, so there's nothing more celebratory than a free £80 landing in the bank once a month - I like to consider it compensation for the sharts, endless hours of in the night garden and wasted food.
There you have it, just a few realities from your fave mummy blogger. I'm off to make fred some avocado on toast - just kidding, Im napping whilst he dances to Iggle Piggle for the 8th time today.
How do single mums balance it all?
6 November 2019
I used to be a cracking employee, the reliable, high performing type who new the job inside out and smashed targets. These days I'm pretty shit and it's not for lack of trying.
I also used to judge mums who didn't work but back then I wasn't a mum; I didn't understand what a bloody nightmare having a child was and I didn't know of the strain of finding and maintaining a work-life balance. I used to finish work, come home, watch endless episodes of Real Housewives, piss around on the internet and play with make-up. It's never about me anymore, it's always about Fred, and work and handling pressure and juggling hours and constantly trying to keep up with life.
I've been a single mum for around four months now, without being disrespectful to Fred's dad I was pretty much single mum before; all the responsibility fell on me from the finances to Fred's care to holding down a stable job. Life hasn't changed much since he left aside from being able to cook the food I like and having more wardrobe space but finding that balance has become more complex. He lives over 200 miles away, the distance means he's not there at the drop of a hat to co-parent, he's not there to take on the struggles and release some of the burdens either financially or physically so I couldn't be anymore of a single parent if I tried.
This wreaks havoc with trying to maintain a job and manage everything else (including not getting stressed so I don't have another stroke and be totally useless); I didn't anticipate how poorly kids get in childcare and how often. I thought I could have the carer and be a Mum and be some kind of super hero but a year into this rollercoaster I've very quickly learnt that it is in fact impossible to have all your shit together and whoever makes out it is anything other than a constant nightmare is a knobhead. Standard nursery and childcare policy is that if a child has a bout of sickness and diarrhoea, they're not allowed to return to the setting until 48 hours after it's stopped - this is to avoid spreading infection and because understandably, cleaning up the puke and shitty nappies of several grotty kids is impractical and fucking gross. I understand and appreciate why this policy is in place but I didn't anticipate how often kids get infected; my friend (a mother of four) advised me that until they're around three years old they're pretty much ill from October - March, I thought she was exaggerating...we're onto our second October and I can confirm that she was in fact telling the truth.
Fred is on his third round of the shits in as many months, his stomach bugs are more regular than my periods which doesn't help when I'm trying to hold down a job and salvage a career in my absolute state of a life. Three stomach bugs in three months means that I've had three absences from work very quickly and followed by three instances of sickness for myself because Fred loves sharing his germs and my immune system is fucked. Whilst my employers are understanding, accommodating and the rest - I still feel a huge weight of guilt for constantly needing time off, I'm more than aware that I'm letting people down and I dread returning to work; I feel as though I have to walk in with my tail between my legs because I've been off again and somewhat frustratingly, aside from some wet poos Fred is as bright as a button. It's not as though he's on the sofa, poorly and needing my full attention meaning that I'm sitting here wishing I was at work and then feeling guilty for not wanting to be with him, it's a vicious cycle of constantly feeling as though I'm disappointing someone despite the fact that I'm trying my best.
There is a case that I could work from home, if Fred is well in himself and doesn't need undivided attention I could focus my efforts on trying to work but any employer would be concerned at how much I could focus and how consistent I could be. All of the family I have are working themselves and have kids meaning that they can't take time off work to look after my child nor would they want to at the risk of infecting their own kids and needing further time off. I'm in a position where I am consistently off work, out of annual leave and looking having to take unpaid leave and be out of pocket. It's situations like this where I would be better off not working; I wouldn't have the childcare costs and disgustingly I would bring home the same amount of money in benefits than I would my monthly wage but in turn I'd be bored out of my mind and Fred would probably barely get poorly because he wouldn't be around other kids to get sick.
How do working single mums cope? Is there a magical hack for handling the never-ending stomach bugs and holding a job down or am I right in thinking that it's a myth?
Young stroke survivors need better aftercare
29 October 2019
I know I've praised the numerous medical professionals who have helped me throughout this stroke recovery process and I will be eternally grateful for the quick thinking paramedics, Resus staff and the Acute stroke unit nurses to who have helped me feel a little less terrified and scared for my life but I have to admit that I also feel let down and disappointed with some of the care and treatment (or lack of) that I've received and I think this needs to be addressed so that other young stroke survivors don't have to go through the same.
Firstly, I need to stress how much I understand that the NHS is overstretched, short-staffed and at breaking point; I appreciate the fact that I am receiving medical care for free and I acknowledge the fact that there are others in the world who don't receive half, if any of the care that I have however, that doesn't deter from the fact that there is room for improvement in the way care is delivered and treatment is organised. I feel, as a young stroke survivor that I have been withheld information, somewhat patronised and left to fend for myself because, as I have been told many times by Dr's and Nurses I have "age and luck on my side". Although this is true and my age and twisted fortune has allowed me to make a strong and quick recovery, there are still many deficits from my stroke that aren't being recognised and not receiving any advice for and it's stressful.
Let's start from the very beginning, after being transferred to Acute Stroke Unit in North Staffs Hospital at around 9pm on the night of my stroke I was settled in and soon told that it was time for my Mum to leave. Being a deeply concerned and worried mother she tried to subtly ask if I would be okay enough throughout the night to leave (to put it bluntly she was asking what the chances are of me popping it whilst she was gone) and we all knew it. I know that nurses can't make promises and misinform patients and families but I was sitting bolt upright in my bead, sharing my wonky little face on Instagram thinking that I was over the worst. No one told me how critical the first 24 hours are post stroke, no one told me that I was still high risk...in fact, no one told me what a bloody stroke even was. The nurse turned to my Mum, stoney faced and said, in monotone "we hope for the best but cannot make any predictions at this point", it reads as a pretty reasonable response, they want me to live but they can't promise it; but the tone, the lack of any reassurance or empathy terrified me and I spent that night alone, wondering if I was going to survive the night.
The next morning a consultant and physiotherapist marched into my room, they completed the various tests to ascertain the extent of my damage and I was then made to walk, get dressed and drink - I was grateful for the consultant's not bullshit manner, she told me that the stroke was down to the pill and I should get the coil. I was kept in for the most of the day pending another CT scan, when she came back the results had confirmed my stroke, she spoke to me and My Mum and told me that I could go back to work in two weeks, I was to take Asparin followed by Clopidogrel and was to get on with my life. My Mum asked if there would be any emotional or behavioural affects from the stroke, the consultant said no, discharged me and sauntered off never to be seen again. Three months later I was called to attend a consultation with another stroke consultant, he went through things that had happened leading up to the stroke and told us that it seemed as though it was "just one of those things" and tough shit, he advised that often it is better to not have a cause for a stroke as statistically "those without specific causes are less likely to have another" this comforted and I was pretty happy as I skipped off for some routine blood tests (that should have been completed three months prior). A month later I received a call from the same consultant's secretary and advised that "the cause for my stroke had been found" and I needed to come in ASAP; this is when I was diagnosed with Antiphosphilipid Syndrome (APS), shown the NHS page for it, told I was to go on Warfarin and that I could take the mini pill and sent on my merry little way to await a referral to a Haematologist. The Warfarin clinic referral came through first, I attended my first appointment, had my INR checked, was told what my dose and target was and once again sent on my with no information about APS.
Some months later I received a letter inviting me to attend an appointment at "the medical clinic of..." it included to Dr's name but not what it was for and the department wasn't included. It transpired that this appointment was for the Stroke Clinic back in Crewe and I had been transferred, the Dr was lovely, not much older than myself and very keen to do some more investigations. I asked a lot of questions about my APS diagnosis, concerns that I had with my veins as well as contraception advice, I was told that I needed to speak to my Haematologist about the APS and ask my GP about the pill because "most of the Dr's patients are over 60" and she "hadn't been asked about contraception for". Two weeks later I attended a Saline Contrast Echocardiogram where a hole in my heart was discovered; the Cardiologist said that he reckons this was the cause for the stroke and not the Antiphosphilid Syndrome but I'd find out more at my next stroke consultation...whenever that will be.
As stated above, I understand that the NHS is overstretched and the 3-4 month wait between various appointments is often unavoidable and could arguably indicate that I am not in any grave danger...but I'm not being told this. I'm attending these appointments, receiving more and more bad news and then being sent away to deal with it because I'm young, because I'm lucky. But what these people don't understand, or have the time or resources to understand is the detrimental effect that this is having on my quality of life. I have been diagnosed with a syndrome that I know nothing about other than what I've googled, I have to seek advice from people online, books and medical journals to look for reassurance or if I should be concerned. I've had to take time off work for feeling too unwell and panicked to attend, I've called 111 thinking I was having a heart attack, I've been to my GP numerous times about APS only to be shown the NHS page for it and be told to "just wait" for my consultation, no one is able to answer my contraception queries, I'm being offered anti-depressants left right and centre when the route of the problem is that I'm being left for months on end not having a clue what's going on with me and being expected to crack on...because I'm young.
I was discharged from the community stroke team 12 weeks post stroke so no longer have access to CBT and counselling and would have to make a general referral via my GP - this would probably take as long as my consultations to come through. I'm at a point now where anxiety can very quickly take hold when I feel unwell and the more bad news I receive (with minimal information) means that I still don't know what's a symptom of something serious and what isn't which immediately makes me assume the worst and worry. My main source of comfort is my local pharmacist, when I feel worried I ask him to check my blood pressure, I think he knows now that something has happened when I attend and he gives me practical advice and a bit of comfort. More recently I went because I felt lethargic and the veins on my hards were raised and felt painful....turns out my blood pressure was low and I needed some water, the poor bloke's face drops when I walk in and I'm sure he thinks I'm mental.
I don't need drugs, I don't counselling and I don't need therapy; I need to be informed, advised and guided. It's unfair to diagnose someone with a syndrome and not offer any consultation for six months, this would have an impact on anyone's mental health and quality of life. I feel as though I have been patronised and uninformed because I'm young and 'carefree' but I'm not, I'm a mother, a professional and a grown woman - I need to know what my options are, what my risks and when to be concerned not just left to get on with it because of my age. Based on first appearances, it looks like I have "bounced back" from the stroke but I still have a paralysed left eyelid, my fingertips are still dead, there are tendons or ligaments in my neck that don't work and don't know if they ever will again...no one has listened.
It's hard having anxious thoughts when the solution and cause is blindingly obvious and entirely out of my control and I'm sure I'm not the only stroke survivor feeling this way or, that is treatment (or lack of) only applies to young stroke survivors but the resounding message I've received from multiple professionals is "you're young, you'll be fine" yet the test results are showing that I am in fact not fine. Stroke survivors (and anyone suffering with these issues) need more practical and medical guidance, we need to be spoken to frankly and treated intelligently rather than dismissed and offered anti-depressants and I'm not sure how we go about finding this.
Ditching the nappy bag with Gaston Luga [GIFTED]
24 October 2019
This post contains gifted items
The best thing about having a baby (aside from the actual baby) was when he started to walk because it means I don't have to carry a mini suitcase everywhere I go for every eventually and I can finally say goodbye to the nappy bag and opt for something a bit more stylish thanks to the Gaston Luga. Fred the toddler is toddling and we try and get out and about without the buggy as much as possible because it's a pain in the backside and Fred loves exploring. This does mean that I need to wear a backpack and have my hands free to catch and scoop up my crazy little human when he's doing mental stuff like trying to run into roads and diving in puddles (head first). Whilst I'm acting like a riot police officer, shepherd and MMA fighter I like to try and maintain some personal style I'm a handbag kind of woman, after months of not very subtle hints I persuaded bribed my ex into buying me my first designer bag at the airport on the way to holiday after explaining how much of a discount
Thankfully Gaston Luga have come to the rescue with some higher end bags that also look and feel fabulous. I was very kindly gifted the Classy backpack and chose black and pink, the backpack is made from water resistant nylon and contains plenty of room inside for Fred's stuff and mine. I like to take as little stuff as possible out with us so our bag usually contains a few nappies, wipes, nappy bags a change of trousers and top a small toy (or two), a water bottle and my phone, purse and keys as well as any make-up bits and bobs that I need. I'm not a regular back pack wearer so find lugging my valuables around on my back a little insecure, the Classy bag as a hidden pocket on the back that's perfect for storing things like cameras and phones. In typical Swedish style, the Classy back pack is practical and extra-stylish, I don't feel like a mum-bot carrying it around and finally feel like I almost have my life together.The Classy bag also came with a free passport holder, my passport might be slightly missing at the moment but I've been using the holder to keep my Warfarin book handy thus making blood thinners a little more glam. Classy bags now come with a free travel bag, perfect for any cosmetic essentials.
If you want to bag yourself (see what I did there?) a bargain, you can get yourself 15% off all Gaston Luga products with the code ISSYBELLE15
What does a stroke feel like?
22 September 2019
One of the most common questions I get asked is “what does a stroke feel like?', the recent campaign run by the Stroke Association shows that all strokes feel different, talk about different strokes for different folk and all that. Even consultant’s asked what happened and what it felt like at almost every appointment and whilst I’ve covered the physical journey of what happened I’ve never really got into the feeling of it. I suppose so soon afterwards it wasn’t something that I could comprehend and relay in a way that didn’t make me feel “wishy washy” but now, eight months later I think I can just about put into some sort of perspective.
The truth is, the stroke didn’t feel that bad. When my face was dropping and my arm was weakening I couldn’t feel it, I knew something was wrong as the paramedics were assessing me but my naivety never assumed it could be something as serious as a stroke. The fear in my mum’s eyes unnerved me though, she’s never spoken down to me unless I was getting a bollocking and the only other time she’d used that sickening mumsy tone was when I was in year 5 and fucked my arm up so I knew it was bad when she kept telling me that I'd be ok.
It was only in A&E when the MRI results came back and they confirmed it was a stroke that my heart rate rose, my monitors started going mental, my mum and cousin burst into tears and I was told an ambulance was on its way to take me to Stoke that the severity of what had happened hit me. As far as I was concerned my life was ruined, my body had failed me, I couldn’t be a Mum, I could barely wipe my arse and I looked like a Picasso painting. I didn’t know people could recover and I didn’t know that the worse was yet to come.
I spent the following three months living like a ghost, I was tip toeing around my body, terrified of what it was going to do next and waking up every day convinced that this was going to be the day I die. At the time I didn’t understand how critical the first 24 hours were, but I soon learnt about the first 12 weeks and the fact that I possibly “wasn’t out of the woods yet” was enough to almost send me over the edge. The community stroke team were brilliant, they kept calling my mum for updates because I was in denial about how I was feeling, I’d resigned my self to the fact that this was my life now, living in fear was my normal; thankfully my mum was able to tell them that I wasn’t coping and I was soon assigned a therapist and started CBT. I’ll be honest, it didn’t work.
I was told to write down my bad thoughts, repeat them over and over until they lost their meaning but leaving your child motherless isn’t a thought that you can shake off with mantras and arty farty breathing techniques. My best friends were amazing and knew how to distract me, talking shit for hours in the WhatsApp group chat turned my mind away from the second stroke that I was absolutely sure I was going to have.
I returned to work after three months, it was soon, too soon. I wasn’t ready but I needed to get out of the house. I’d sit at my desk and panic that it was going to happen at work and I’d be embarrassed, I was scared I wouldn’t remember my job, that people would notice my face and treat me differently. Thankfully I work with a bunch of likeminded people, on my first day back someone pulled a stroke face at me, there was a welcome back banner on my desk and a card - it felt like coming home but I still couldn’t shake the fear. I was constantly distracted by every head ache or sensation of pins and needles and tried to block it out.
Starting warfarin and getting the APS diagnosis helped - I had a reason and treatment to prevent it. I went on holiday with my family and for the first time in over a year I relaxed, I drank coffee in the bay window, wandered around the gift shop, looked at the mountain and went on walks, it was what I needed and I felt I’d recovered just that little bit more but going back to work and home soon turned my mind back to fear. I looked up APS symptoms and convinced myself I was having a heart attack followed by a DVT a few weeks later. The heart attack was anxiety, the chest and shoulder pain were aches from pushing fat Fred around and the DVT was bloody cramp. My GP was brilliant and told me it’d be a miracle if I had another stroke, it helped. Going through the science and logic of the likelihood of anything happening again was more beneficial than meditating.
One evening my mum gave me a stern talking to, she reminded me that I was stronger than this and that anxiety was a 'poorliness' that I could overcome, if I could recover my brain from damage I could recover from anxiety. So I did, I started to rationalise my thoughts before thinking the worst. I started to big laugh again trust my body rather than cower in the corner of my mind and be scared of it.
Eight months later and I’m a different person. I’m not old me, she can’t come to the phone, she’s dead; but I’m happy and I’m relaxed. I’m excited about the future, I don’t know what it holds but that makes it more exciting. I’m not stressing about mundane things, I’m not forcing happiness or begging for it where it’s not going to be given. I’m on my own with Fred getting us by and it’s good. There’s still niggles, sometimes I get myself in a flap over something but it soon passes. I’ve now resigned myself to the fact that I’ll probably always have wobbles of panic and the stroke will never be far from my mind but it’s not taking over, I’m not scared anymore. If it happens it happens and there’s nowt much I can do.
Post-stroke mental health isn’t talked about enough, I reckon it’s partly due to the fact that it’s embarrassing to say you’re living every day scared to death but also because it’s terrifying, when you’re in a state of mind that you can’t escape, trapped in a body that could have you off in any second you can’t verbalise it, you can’t explain the fear and the sense of loneliness it brings with it; it consumes you in the sense that you feel as though you should almost be grateful for feeling this way because at least you’re not dead...but it’s not living either. It’s crouching in the corner of your mind because the rest is broken and scary and it takes a lot of strength to stand up and take control of it...especially if you’re still trying to get your shitting left eyelid working at the same time.
How to handle the glamorisation of invisible illnesses
14 July 2019
AD | Tshirts were gifted by Invisible Merch
Here’s one for you, I didn’t think my stroke was that serious because I was in the acute stroke unit and acute angles are small so my stroke must’ve been too. When I tried to explain this to my mum she called me knobhead for being so thick and an extra knobhead for having a stroke.
Since being diagnosed with Antiphosphilipid Syndrome (that I can now proudly pronounce) I’ve had loads of people reach out wanting be Hughes Syndrome (that’s what the cool kids call it) mates and share symptoms and stories etc. Some of these people have been amazing at reassuring me and when I was still very anxious and unsure of what to do with myself and others have been well, to put frankly, so negative that they might as well have started planning my funeral.
There’s something about the invisible and chronic illness communities that, as someone who now has an invisible and somewhat chronic illness, really puts me off giving myself these labels and that’s because of the culture that is adopted by some people when they wear their “illness badges”. I have no shame in my syndrome, if you’re a regular around these parts you’ll have witnessed how candid I am about my health from infertility to stroke recovery I’ve been open, frank and factual about diagnosis, prognosis and recovery and time and time again I’ve been praised and commended for my upbeat and positive response to all this shite that my body has been chucking at me over the past few years.
I’m not about to toot my own horn and claim that I have some super positive mindset or, have a pop at people who can’t be positive about their situations because when I was lying in a hospital bed, watching P who was so damaged because of a stroke repeatedly be unfolded by nurses because she couldn’t physically hold herself up, you can imagine that I wasn’t feeling particularly bright and sunny about my future and for a long time after my stroke it did consume me, it had taken over my life and I there wasn't a moment when I didn't think about it.
Whilst I wear my stoke badge with pride and will always strive to raise awareness and money as well as share my Hughes Syndrome and warfarin stuff; I point blank refuse to let my immune system’s shortcomings consume me. I don’t want to count spoons, I don’t want to complain about the things I can’t do anymore and I certainly don’t want to slate the medication that’s keeping me safe, this is my new normal and the fact that I'm still alive and able to be the afore mentioned knobhead is enough for me.
Hear me out here, I’m not having a pop at people who are consumed by their illnesses; I don’t blame them. When you’re constantly battered by symptoms and struggling with your life it’s hard to not be consumed by it because it has taken over.
I fully acknowledge that I’m privileged (and lucky) enough to still be able to live a relatively normal life, almost close to my old one and still far enough to sometimes make me sad, but in all this I refuse to let it get to me because I'm fortunate to be able to choose not to. That being said, I’m invisibly ill enough to understand the need for people like to me be advocated and represented; when I first attended the warfarin clinic the nurse was adamant that I had attended the wrong clinic and it wasn’t until I pulled out my warfarin book that she realised that although I’m only 28, I do really need the medication, please hun. I’ve had people scoff when I blame brain damage for a blip in my memory or a delay in my speech as though I’m joking (although I have used it to get out of trouble too many times already); I can’t tell you how many times I’ve had to explain to people why baby number two won’t be coming along just yet, aside from the fact that my body would like to get over the stroke first, there’s the addition that the main side effect of Hughes syndrome is miscarriage and still birth and warfarin and pregnancy are not mates at all.
As well as looking 21 (humour me) the fact that “I don’t look ill” doesn’t help when I’m trying to explain how some of my brain is dead and my blood is stickier then a toddler’s hands after lunch, numerous people have tried to palm my stroke off as a mini one based on the fact that I’ve made such a good recovery and this pisses me off no end. Give it the credit that it deserves, I haven’t been unable to wink with my left eye for 5 months for it to be brushed off so easily. If I tell you that I had a big bastard stroke, accept it. The lesson here is to not make assumptions about someone’s health, if they tell you that they’re unwell, don’t try and lessen the severity of what they’ve said...invisible people need to be heard.
On the other hand, the raised awareness of invisible illnesses and mental health has had a negative effect on itself in the sense that conditions and terms have become somewhat glamorised. The lines between feeling anxious about a specific instance and suffering from anxiety have been blurred and because we have to tread carefully, we can’t call this behaviour when we see it because, (in my own words) we shouldn’t “lessen the severity” of what someone had said. It’s hard when some people come across as though they’re almost relishing in being unwell, when they’re listing symptoms as though they’re achievements or desperately trying to self-diagnose in a bid to be the sickest. Often the loud voices of these kind of people are drowning out the quieter voices of the folk who really could do with being lent an ear and that's why I'll always strive to raise awareness despite my conflict because P in bay 16 on the acute stroke unit didn't have a voice, and I do.
This behaviour causes people to lack patience and sympathy with invisible illness awareness and consequently not be open to understanding people who are suffering, coping and getting on with it. So what we do? The obvious answer is be kind, regardless; because after all, if you have a need to lie about being unwell....you’re already there.
The T-shirts I'm wearing in these photos are from Invisible Merch, where25% of profits will be donated to a charity of your choice- Just type it in at the checkout! This is an amazoing opportunity to wear clothing promoting awareness of invisible illnesses as well as raising money for a charity of your choice.
The Hinch Hype and Feminsim
2 July 2019
There were two types of people on social media when Mrs
Hinch rose to fame, those who said "I've been using Zoflora alllllll my
life, it's nothing new" and the other people who went and bought crates of
it to stuff their Narnias with tonnes of cleaning booty. Hinch got people's backs
up, whilst the majority of people loved her content and wanted sparkling,
spanking homes a lot of people questioned her mental health and diagnosed her
with OCD, others called her sad and some said she was boring but she undeniably
has something, whether she's your cup of tea or not she's clearly liked enough to
gain so many followers in such a short amount of time and become a full-time
influencer, the job of the decade.
There are numerous arguments for and against the success and
popularity of this woman who made it to insta-fame and there are many different angles that
people go in at to tear her down or raise her up. Even my own stance on the
topic is ambiguous; in one instance I’m astounded and somewhat concerned that
cleaning could become such a trend but I’m also guilty of believing the hype.
12 weeks off work is long time and much like Mrs H’s claims, I found clarity
from post-stroke anxiety in falling into a rigid housework routine and found
myself even shoving tumble dryer sheets down the back of the sofa on one occasion…just
the one mind. I do have a barrsket that I shove my cleaning bits in and cart
around the house whilst getting the daily jobs done and I am liberally spraying
my soft furnishings with diluted Lenor more often than I’d like to admit but I haven’t fully jumped on the Hinch
bandwagon and that’s for two reasons;
1. I have this weird dislike of trends, you know that ‘it’s
cool not to find cool things cool’ attitude that people have? I’m of those
people; I try and tone it down because I’m a simple soul myself and don’t have
anything going on in my life to make me any less of a basic bitch than marble
Mary with her rose gold accessories and pumpkin spiced latte loving ways but I’m
just not quick to jump in on a trend in case it's not as cool as people first thought and then I can smugly declare how I never thought it was cool to start with when the hype dies down.
2. I’m not buying into the Gleam machine. I find there’s
something insidious about the affect that the management of some content creators has on them in the long term. I feel like individuals are milked dry upon discovery and
soon become slaves to their brand and forced to spiel out the same old content
until they’re (putting it bluntly) too old to get away with it anymore.
There’s been a shift in long term managed Youtubers who have needed to produce ‘more
mature’ content to suit their ageing and loyal audiences whilst remaining child friendly
enough to reel in new subscribers from a generation who don’t know life before Youtube and Instagram etc. To her credit Mrs H
does state in her book that she’s aware that’ she can’t ride the cleaning
product train forever and comments on numerous occasions that she wants to ‘stay
grounded’ and remain authentic but, how much authenticity can someone retain
when they become a brand?
From reading comments on her audio-book Facebook advert and
various tweets and Instagram comments a lot of people seem to be outraged about
the fact that she’s risen to fame for ‘just cleaning’ and when you think about
it, it is outrageous that chores that most of us undertake have been turned
into a brand with die-hard fans and given Mrs H an alleged net worth of £1m. I
think most of the outrage also stems from the fact that although it’s a ridiculously
simple concept, once it has been done it can’t be done again. Anyone attempting
to produce similar content will only be considered as a ‘Mrs Hinch rip off' and
accused of copying her content. This is something that the likes of Gleam will
have undoubtedly taken into consideration and thus allowing Mrs H to wear her
cleaning crown without threat for the foreseeable, I’ll be interested to see
how her content develops with time. As a follower I’m becoming less engaged
with the Procter & Gamble ads and I don’t need anymore tutorials on putting my
sink to bed but hats off to her, there’s still something preventing me from pressing that
Unfollow button and it’s curiosity.
The story of the down to earth commoner, woman of the
people, representing the working glass, girl done good story never gets
old. Look at Princess Diana and the Duchess of Cambridge; we were told and told
by the press over and over that these women were 'commoners', just like us (with
their aristocratic rich AF families and sickeningly expensive educations) and
watching them rise to the top engaged the world. The same has happened on an albeit
smaller scale with Mrs H, she is 'just like us', she has a quiet life, living
with her Handsomes and pottering about with Vera and Minkeh et al. Since
discovery, more of her story has unfolded and kept people hooked on the Hinch
Hype. For me it’s her health story, I also have a condition that makes my blood
clot more than it should and I’m on blood thinners for the rest of my
life and like her, when and if I get pregnant again I’ll be injecting myself
daily with heparin. Following her pregnancy and witnessing her appear to have
had a fairly easy time (all things considered) has given me a bit of hope and
that’s not something I don't want to be letting go of.
Emily Clark very recently argued in the S*n that “Housework
and women’s work have historically amounted to one and the same, and whether
she realises it or not, Mrs Hinch is spearheading that misconception” I can see where Emily is coming from with this point however, women and men
for that matter have progressed since the 40’s and Mrs H’s hubby is often seen
undertaking the hinching whilst Mrs H puts her feet up and relaxes, there
hasn’t been one instance where she said ever stated or implied that hinching is gender specific so should we be blaming Mrs H for women who choose to get on
the hinching train, taking on the majority of work with it?
Housework and 'womenswork' may be one and the same but
hinching and housework seem to be almost entirely different. Granted, they’re
the same tasks with the same outcomes but hinching is more of a way of life and
more importantly, a choice. Emily also said that not being able board the Hinch
bandwagon makes her feel like a failure she claims that “no matter how fun
hinching invariably becomes, it is still unpaid labour” I see the argument in
this however, someone needs to do it regardless of whether you’re jotting your
jobs down with a dimante-ended pen or not and no one is going to pay you for
cleaning your floor and no matter how much of a feminist you are, the patriarchy can't be blamed for your blocked bog if you're living the single life.
I also appreciate the fact that those fans desperately attempting to emanate Mrs H's way of life by following her routines, shoving wardrobes in their garages and making backwards hinch lists etc. may be shooting themselves in the feet when it comes to sharing the house/hinch work with their male partners, as cleaning has been transformed into a hobby and, hobbies are optional just like Xbox, football and watching people play Xbox on Youtube but where to we draw the line and stop blaming influencers and take accountability for ourselves? As a blogger it's probably odd that I'm uncomfortable with influencer culture, whilst I appreciate that people are influenced by what they see on social media and thoroughly understand ads and sponsored content, whilst influencers are being clamped down on by the ASA and CMA to adhere to strict rules to ensure they're not misleading followers, shouldn't consumers take some accountability and not be so easily influenced? (before anyone pipes up...no, this does not apply to kids, we're talking about grown ass women here).
No one is telling women who don't live in spotless grey and white themed houses that they're not good enough. More often than not my house has a whiff of cat piss, I haven't caught up with my washing ever and as I'm typing this I've noticed a slice of Nutella on toast (Nutella side down of course) poking out from underneath the sofa. I've hoovered up twice and washed up three times, I've folded laundry, sprayed the sides and my home still looks like 57 toddlers have had a rave in the living room and my kitchen could be featured on some kind of Channel 5 scumbag tennant exposé but do I feel like I've failed as a woman, mother and partner? naaah. Us womenfolk need to be as strong as our foremothers, y'know the ones who gave their lives for our rights, the ones who starved to death so we could vote. Stop allowing your worth as a woman to be determined by the comparison of your home to another woman's on Instagram.
I'm still undecided where I stand on the hinch hype and rise of the domestic influencers; I'm kind of there, outside the party with my Minky in hand cleaning a bit but mostly watching and lurking, waiting to see what happens and staying enough distance away so that I can shove my minky in pocket and smugly declare that I never thought it was cool anyway when the hype dies down.
I also appreciate the fact that those fans desperately attempting to emanate Mrs H's way of life by following her routines, shoving wardrobes in their garages and making backwards hinch lists etc. may be shooting themselves in the feet when it comes to sharing the house/hinch work with their male partners, as cleaning has been transformed into a hobby and, hobbies are optional just like Xbox, football and watching people play Xbox on Youtube but where to we draw the line and stop blaming influencers and take accountability for ourselves? As a blogger it's probably odd that I'm uncomfortable with influencer culture, whilst I appreciate that people are influenced by what they see on social media and thoroughly understand ads and sponsored content, whilst influencers are being clamped down on by the ASA and CMA to adhere to strict rules to ensure they're not misleading followers, shouldn't consumers take some accountability and not be so easily influenced? (before anyone pipes up...no, this does not apply to kids, we're talking about grown ass women here).
No one is telling women who don't live in spotless grey and white themed houses that they're not good enough. More often than not my house has a whiff of cat piss, I haven't caught up with my washing ever and as I'm typing this I've noticed a slice of Nutella on toast (Nutella side down of course) poking out from underneath the sofa. I've hoovered up twice and washed up three times, I've folded laundry, sprayed the sides and my home still looks like 57 toddlers have had a rave in the living room and my kitchen could be featured on some kind of Channel 5 scumbag tennant exposé but do I feel like I've failed as a woman, mother and partner? naaah. Us womenfolk need to be as strong as our foremothers, y'know the ones who gave their lives for our rights, the ones who starved to death so we could vote. Stop allowing your worth as a woman to be determined by the comparison of your home to another woman's on Instagram.
I'm still undecided where I stand on the hinch hype and rise of the domestic influencers; I'm kind of there, outside the party with my Minky in hand cleaning a bit but mostly watching and lurking, waiting to see what happens and staying enough distance away so that I can shove my minky in pocket and smugly declare that I never thought it was cool anyway when the hype dies down.
10 weird things that my 1 year old did this week
23 May 2019
Babies are weird, like scary weird. As much as they're cute and all that they often weird and freaky things that make you laugh out of nervousness because otherwise you might end up having a breakdown or calling a priest. Here's ten weird things my kid has done this week:
1. Tries to feed something that I can't see. Whatever it is stands to the right of him when he's in his high chair and is a good girl. I'm chalking it down to imagination because the other option is a bit too scary for me.
2. Deliberately bangs his head on the floor or wall to make himself cry if his tantrum isn't working
3. Growls at me, usually in public places when there's plenty of people to hear
4. He doesn't understand what his shadow is and thinks it's a little baby in the wall chasing him, at least it keeps him occupied for a while
5. Wants to play with anything that isn't his like knives, hot drinks and anything else that might be harmful
6. Has absolutely no sense of danger and will willingly fling himself off the sofa or anyone's shoulders but will cry if he falls over whilst crawling
7. Tries to drink my coffee as often as possible
7. Tries to drink my coffee as often as possible
8. Shouts 'Yes' if I say no but still calls me A Hag instead of Mama
9. Tells me, daily that his Auntie's dog Oscar is a good dog
Stroke Recovery: 3 Month Post-Stroke Consultation
19 May 2019
I wasn't expecting another consultation for a couple of months but last Tuesday I got a call from my Consultant's secretary saying "The Dr has found the cause of your stroke and wants to see you this week to discuss your treatment", bricks were shat. We all know how long appointments take to come through so the fact that I was being seen within days felt rushed and urgent and that can never be good news. I returned to my desk and sat and had a silent panic / flap. I told my friend what happened and she advised calling them back and asking what was wrong with me and if it was something terrible. I called back and the secretary was really reassuring, she said that if it was something life threatening I'd be rushed in via ambulance immediately and I was to try and relax and enjoy spending time with my son. I tried so hard to chill out but I was a mess, still shitting bricks, having panic and anxiety symptoms and generally flipping out. After approximately 34 years, Friday came along and my Mum and I took that dreaded trip to Newcastle and here's what went down.
First things First
Rhiannon and I spent a lot of time speculating what could be wrong, I was expecting something like Atrial Fibrilation which is really manageable but on top if that and in a my state of panic I had also convinced myself that I had bowel cancer, kidney failure and heart disease. Rhiannon had set herself on Vascular Dementia or HIV, we're a positive pair. When the consultant opened the door to invite us into his office we noticed that he had a mate (another Dr) in there with him which immediately made us think SHIT, there's always two when it's bad news. Turns it the news wasn't so bad but I still have no idea why he was there...he was a nice guy though.
The first thing that the consultant did was get my MRI scan pictures up because he knew I was keen to have a look at my brain, he went through each image and explained what had happened. The two light areas are the two spaces where the stroke had damaged my brain, I think he said that the lightness or darkness of the patches of damage show how recently they happened and the damage of my noggin was definitely due to the old stroke. He also reconfirmed that there wasn't any damage done to my Internal Cartoid Arteries that is most common in older stroke survivors.
Diagnosis
He then went through the blood results that had come back and said that my blood had high levels of two anti-bodies; Anti-cardiolipin and B2 Glycoprotein and these fitted me right into the box of someone with Antiphospholipid Syndrome or, APS or, Hughes Syndrome. Obviously I know pretty much nothing about this at the moment but in a nutshell it's sticky blood and the fact that I went on a high Estrogen pill caused my blood to thicken right up and whack a clot on my brain. I asked some very important questions that my consultant had already anticipated because he's dead good like that;
Why have I developed APS?
Pregnancy, most women who don't have APS before pregnancy often develop it afterwards, it could be something to do with the change of hormones or it could be something dead complicated and sciency that I have no clue about but the good news out of this is that it means that it's not hereditary and it's very unlikely that I've passed anything on to Freddie.
Can I still have more children?
Yes, but with very strict monitoring and I would be induced early and very likely need a section. Sadly most women are diagnosed with APS after suffering multiple miscarriages or still births so the fact that a stroke was the indicator or my APS seems more like a blessing now. With the right medication and monitoring 80% of women with APS go on to have successful pregnancies so as you can imagine the decision to have another baby isn't something that we'll be taking lightly.
What are the symptoms of APS
From what I can gather it's pretty much symptom free hence why it's hard to diagnose and most people are only diagnosed after having suffered, DVT, Strokes, Heart Attacks and Multiple Miscarriages so again, I think I'm pretty lucky.
Watch the consultation vlog here
Treatment
My treatment will change, I need to go on a blood thinner rather than anti-platelet; I'll be joining my Granddad at the Warfarin clinic, this is the main thing that scared me, Warfarin seems like such a scary drug but so many people are on it and have normal lives that I'm coming round it it. The regular check ups at the clinic will work wonders for my anxiety as the monitoring will really put me at ease and maybe stop me from pestering that poor pharmacist at my local pharmacy for blood pressure checks...maybe. I'll be on Warfarin for the rest of my life and will probs have to get some fancy warfarin medical jewellery because it's better to be safe than sorry. The consultant said that there's no great rush to start the warfarin so I've got time to get loads of tattoos and piercings before I do.
Warfarin does cause birth defects so during pregnancy I would get Heparin injections to keep my blood thin to try and avoid pre-eclampsia and another bloody stroke, or worse.
Going Forward
I have mixed feelings, there's no cure for APS so it's all about ongoing lifelong treatment which seems daunting but it's also tough shit, I have to deal with it. I'm happy to have a cause for the stroke and the fact that I'll get ongoing and regular monitoring really puts me at ease. The thought of being on Warfarin forever still scares me a little and there's the pregnancy dangers but ultimately, I'm glad it's a condition that thousands of people live with and go on to live normal and healthy lives. My stroke seems like such a teeny factor in this mental journey that my body is taking me on.
Have Bounty stolen your data? Here's how Bott and Co can help.
14 May 2019
I've said it before and I'll say it again; giving birth isn't the most delightful experience, the outcome is worth it but the aftermath can be pretty traumatic in itself and leave new mums in a pretty vulnerable state. We all know how Fred's birth went down and the subsequent dramas that ensued but I never really talked about my stay in hospital. I was only in for just over 24 hours but those few hours in the ward was an experience in itself. From arguing new parents, screaming mums and babies, my burning bits and the Bounty woman creeping in and out of the bay, it was something I won't forget.
This post is in collaboration with Bott and Co.
This post is in collaboration with Bott and Co.
Picture this, I'm sort of sitting on the bed, more squatting over it because I'm too scared to put any actual pressure on my bum and sit down because there are approximately ten thousand stitches holding me closed; I haven't got my hospital bag, my bits are on fire and I'm looking at this little thing that I just pushed out wondering what the hell to do with him, or my bits and wondering where food is because I am starving. Whilst I'm pondering how to deal with my brand new life as though it's a shock that I gave birth, like I didn't plan it or spend the past nine months expecting it, this woman appears out of nowhere with a camera in one hand and some kind of lucky bag in the other.
She offers to take a photo of Fred (like I haven't already filled up my phone memory and cloud with photos of him) in a pain-induced daze (the meds hadn't been round yet) I politely declined her offer of a photoshoot, explained that I didn't have a card or cash on me to pay and that my snap happy mum would be returning with her own massive camera later. The woman/magician then pulled out an Ipad and asked for some details "to sign me up" and perched herself on my bed, probably out of jealousy that she could perch I told her I didn't want to sign up and pretended that I needed the loo (I didn't, I was still terrified to pee at this point) and she moved on to the woman next to me.
I'm glad that I didn't sign up to Bounty there and then because it has come to light that Bounty have illegally breached approximately 34.4 million data records belonging to 14 million people in recent years. These records including babies dates of birth, pregnancy statuses and postal and email addresses have been sold on to large companies such as Indicia and Sky. If you've signed up to Bounty and have received an influx of marketing emails in your inbox then the chances are that Bounty are to blame. I'm not often surprised when companies sell on personal data but it makes me feel especially uncomfortable that Bounty who are in some people's experiences renowned for preying on women when they're arguably at their most vulnerable are going on to further abuse that position by passing on confidential information for financial gain.
More shockingly, thousands if not millions of parents are totally unaware of this breach in Data Protection. whilst Bounty have been fined £400,000 by the ICO (Information Commissioner's Office), the damage of this data misuse has already been done, sold and used by other companies. Thankfully, Bott and Co are working together to create a group legal claim for those affected, if you feel that this is you then sign up here. Bott and Co are working on a no win no fee basis, having recently been featured on the Money Show and having excellent feedback from customers they have proved that they are a reliable solicitors passionate about consumer rights, Coby Benson, Solicitor at Bott and Co says “Personal data is being lost, stolen and compromised on a mass scale and at an alarming rate – and it is simply not acceptable. In this case, Bounty sold its customers’ data for its own financial gains, which is shocking. We’re starting group legal action against Bounty as it has breached data protection laws by sharing personal and potentially sensitive information of millions of parents and parents-to-be.” Read more about the Bott and Co's plan of action here and don't hesitate to contact them if you have any queries.
10 things I didn't know about Strokes
9 May 2019
I didn't know a lot about Strokes until I had one (I had a Stroke if you didn't know) and to save you having to have one I thought I'd jot down some of the things that I didn't know so that you can know them too. Cool? Cool.
1. They can happen for no reason, as in, one day a bit of blood can decide to get stuck in your brain, kill a bit of it and you'll never know why. Mind-blowing (excuse the pun) isn't it?
2. The brain can fully recover from a Stroke, I thought that once you had a Stroke you were pretty f*cked and the damage that you had was forever. When I was sitting in my hospital bed with my harm hanging by my side and only half my face working I didn't properly believe the Dr's when they said I'd make a full recovery, how can you go from having paralysed limb to not having one? Bloody magic the brain is.
3. Strokes don't always hurt, when they're happening they can feel weird but often not painful
4. They really do ruin your life, and it takes a lot of mind over matter and mindfulness (with a damaged mind) to come to terms and move on from it.
5. There's more than one type of Stroke; Ischemic and Hemorrhagic. An Ischemic stroke occurs when a clot blocks the flow of blood to the brain. In a Hemorrhagic stroke, blood leaks into the brain from a ruptured vessel. There are also Mini Strokes or TIAs that are smaller strokes with temporary symptoms, whilst they tend to go away they're often a warning sign and shouldn't be ignored.
6. The timescale for the most effective and successful recovery is just three hours after the first symptom. That is why it's so important to think F.A.S.T and get to a hospital if you suspect you or someone else is having Stroke.
7. If caught in time, Strokes can be very simple to treat. I was given Aspirin, a simple drug that can be bought in the health section of most shops.
8. Stroke is the fourth leading cause of death un the UK
9. A stroke that occurs on one side of the brain will cause damage to the opposite side of the body. Right side brain damage, for example, normally causes left side physical symptoms.
Stroke Recovery Tips, Tools and Tricks
6 May 2019
I've been very lucky to have not been as physically affected by my Stroke as some survivors but I've suffered nonetheless. Whilst there are some excellent resources out there from professional organisations to help survivors overcome and cope with the mountains of emotional and physical challenges that are all part and parcel or having a Stroke, finding advice from real life survivors and seeing how far they have come has been a massive help in my emotional and physical recovery so I've made a list of the resources, tips, tools and tricks that have helped me throughout my recovery.
Reaching out
The Community Stroke team are probably one of the most responsive teams I've had the pleasure of experiencing from our NHS, they seemed to be at my door before I'd even chance to process the fact that I'd had a Stroke, I remember sitting with wonky face and waving my dead hand at two OH's two days after my Stroke and I'll always be grateful for their quick response and all the reassurance that medical professionals gave that I would recover, but it wasn't enough. Strokes take away every thing you know and you can't believe even the most qualified people telling you that you'll be fine because as far as you know, they haven't been through it. For me, I needed to find my people, fellow survivors who had well...survived, who had gone through a terrifying experienced and lived to tell the tale and live pretty much normal lives...and I did. Us Stroke Folk find our own and as soon as a new member to the club that no one wants to join pops up we grab them and give them all the advice, love and support that they need.
Paul found me on Twitter and he just instantly knew how I was feeling and how I was going to feel. Not only is he just a message away but he also has the most detailed account of a Stroke and Stroke Recovery that I've found, I'm still my working my way through it but finding that all my thoughts and feelings were normal convinced me that I was going to be ok one day and knowing that there's a whole community of people out there willing to welcome people in makes even the numbest part of my face tingle
I found Gracie Morrell when watching Stroke Recovery videos on Youtube, watching her smile and laugh he way through her situation whilst being so candid about her experience was just what I needed, the seriousness of Strokes can be overwhelming and having someone normalise it made me feel more normal.
The Three Stromies is an account that found me on Instagram and even featured me on their grid a couple of weeks ago. They're a wonderful community of survivors sharing stories, motivational quotes and people making the absolute most of life, I recommend following them if you want some positivity in your feed.
Stimulating facial nerves
I'm still suffering some facial numbness and and that lower eyelid is still not arsed about being part of my face but I've found some every day beauty tools are helping to get those nerves back in order as well as help ease my face when it goes tight due to tiredness. I've been using my Magnitone Cleansing Brush and Silicone Cleanser are great for not only cleaning my face but also giving my face different sensations to feel and get re-used to. The Micro-sonic pulses help me ascertain where has little and most sensation and track my progress. I've also been using a Jade Roller to massage my various facial oils into my skin a few times a week, the rolling works to massage my face when it's particularly tight and tired as well as provide another sensation for my nerves to get used to; Jade also has some healing benefits that can only help with progress.In addition to the above, I've been following the Speech Therapist's guidance with ticking my face with make-up brushes and inside my face with my toothbrush. From what I was told, retraining those nerves to feel again is all about stimulating them and most of us have a lot of every day items that we can use.
Finding fun ways to do physio
I was fortunate to not need intense physiotherapy, my hand was expected to make a full recovery thank thankfully it did but the advice that the Physio team gave to me was to crack on with life and try and do as much as possible on my own. The day after my Stroke the Phsyio and the Consultant watched me put my PJ bottoms on singlehandedly, literally and said that the sooner I get used to doing things unaided, the quicker I'd recover. I thought that they were tight at the time but they were right. If you still have some movement in your hand then there's some fun ways that you can try and do some physio:- Nail painting, both disastrous and hilarious
- Thumb wars
- Play dough and / or Slime
- Painting (like Gracie Morrell)
- Singing nursery rhymes and doing the actions
- Computer games (handling a controller)
- Sorting sweets and chocolates into colour order before eating them
I also found that doing my facial exercises in the most exaggerated and ridiculous ways possible helped me make light of the fact that I couldn't move half of my face and looked like a Picasso painting when I tried to smile.
Turning it into something positive
I started fundraising for The Stroke Association and took part in a 5k run, doing this with my family helped me make the most of what had been the worst experience of my life. I was able to raise money for charity as well as achieve something for the first time in weeks and it felt good, really good. Owning your Stroke puts you on the right track for recovery; it's a big, shit and scary thing that's happened to but it's part of you and taking ownership of it almost like taking back control of your life.
Allow yourself to grieve
I read somewhere that survivors don't get their life back, they start a new one, and it's so true. My life will never be the same, my outlook on life will never be the same and there was a time when this devastated me. I didn't know what my future held or even if I had one and I missed my old, uncomplicated life. It's normal to miss this, it's normal to go through the stages of grief to help process what has happened and it's important to allow yourself to go through it. It's also ok to have down days and ones where you feel really sorry for yourself. No one is expected to be happy all the time and when you've gone through a trauma, emotions are all over the place and you need time to feel better.
Believe in your recovery
Sounds cheesy AF but whatever stage of recovery you're at now, believe that you can get even 1% better. The brain can do wonderful things...including recovering from brain damage.
Subscribe to:
Posts (Atom)
Social Icons