I’m Dan. I had an SAH (subarachnoid brain haemorrhage with an IVH extension) in June 2019.
Needless to say it completely changed my life. My personality changed, I lost my full-time job and in the end my marriage. I’m a fighter and it’s not my first rodeo, I’m also 20 years into recovery from addiction.
My SAH has also brought on new issues for me I’ve struggled through the last four years and have recently had a diagnosis of Chronic fatigue syndrome with elements of central sensitisation syndrome.
I have had no help from DWP or the NHS. I have been scrutinized, made to feel less than and constantly brushed aside. They don’t care as it’s not their life (seems to be the thing nowadays).
I was just wondering if any other SAH or Stroke survivors on here have been treated with the same indifference. If so how did they move forward.
I am limited to working 12 hours a week due to what I’ve been left with and my CFS but do not receive anything extra. I’ve worked since I was 16 and I’m 50 next year. PiP and the system it works on is ridiculous, it seems unless your disability is physical or you have anxiety you have no chance. I’m currently on LWC (limited working capacity) which gives me no more money financially, I’m living payday to payday. I’m trying to get my DWP to reassess me since my diagnosis they won’t give any time scale. If anyone else is having similar issues, please share. I’m not a moaner, I’m a problem solver. Trying to find some happiness in my life again (my emotions were affected too). Any input is welcome.
@JokerBliss Hi & welcome to the community.
Sorry to hear of the struggles you’ve been having. A stroke of any kind is life changing for sure.
In relation to PIP you really do have to battle them all the way. Not sure if you’ve had any help completing your forms but if not please get some. Citizens Advice can help but there are other organisations that can too. Someone like fightback for justice is also worth a try. You may have to pay but it could be worth it. Remember when you clain PIP you need to concentrate on how your conditions affect your ability to do the PIP descriptors. Remember you need to be able to do them Safely, Timely (no more than twice the time it takes an average person), to an Acceptable standard & Reliably (as many times as you need to).
If you get turned down initially then make sure you do a mandatory reconsideration & then go to tribunal if necessary. A lot more people get awarded at tribunal.
Have you tried joining any support groups? You can meet others in a similar situation at those groups and it would give you an avenue to ask questions etc too.
Hello! I have had a SAH too. Mine was in January. I have had no after care and haven’t been seen by anyone since being discharged in February. I’ve found not many people understand the SAH and the after effects. I was told in hospital I’d be back at work in 4 weeks. I’m still not back at work 10 months later! Like I say I haven’t had any after care so can’t really answer many of your questions but do I feel brushed aside? Definitely. Not to be seen after such a major event is awful. I feel/have felt very uncared for.
I have done an introductory post on here too if you want to read my story. It’s a bit long winded. Sorry My story
Hey there’s no need to apologize, it’s good to know that I’m not alone. Sounds like you’ve really been through it.
I had a headache all week and thought I was coming down with a cold. Brushing my teeth after a nightshift in my bathroom mirror my vision went. Next thing I woke on floor could barely move, no one at home. I thought to myself, ‘I ain’t going out like this’…in-between vomiting and passing out I crawled to my phone on the landing and dialed 999 on about the forth time of regaining consciousness I heard that they were on the way. I couldn’t really speak by that point called my mum and passed out again. I sat for 6 hours in A and E, not much vision, speech, vomiting and passing out until they shit their pants and realized I had an SAH. They told my wife at the time be prepared that I wasn’t coming home. 40% chance of surviving 24hrs 50% of 48 hours if I got through that I wouldn’t die.
I was out of hospital in 9 days, back at work after 3 months…this was all done with Dr Google as COVID reared its head. I had no rehab, help, advice. After 6 months things went rapidly down hill. I couldn’t focus, had terrible fatigue, my speech got worse as did my motor skills. General feeling was that they thought I’d over done it. Sorry you have to laugh. It’s the only thing that’s kept me going. My personality/emotions changed and due to my other issues I lost my job via an occupational health assessment. I also lost my marriage. I’m grateful to be here to see my son grow up, but would be lying if I hadn’t thought it would have been better if I wasn’t. The last four years have been a battle. After having numerous tests including cardiogram, liver biopsy, MRI’s, CT’s, heart monitoring and be passed back and forward from department to department I finally managed to see a neurologist again. It’s taken me a year and a half to see one and four years trying to get recognition/help. DWP, NHS have been useless. I’m so sorry for how you have been treated and I can definitely empathize with you. I was a personal trainer/gym instructor always looked after myself and had a good diet. Don’t drink anymore, smoke or take drugs…why me? The answer is why not? My life has totally changed and I’ve had to adapt myself so I can utilize what I’ve been left with. I think this process will be a lengthy one. My only advice to you is don’t give up. I know it’s hard, make people listen…you’ll have to do it repeatedly but someone, some where will step up to help if you bang on enough doors. Don’t be polite, rattle some cages. If you any questions or want to ask me anything I’ll do what I can to help. Takecare, Dan
Welcome to the community, I’m sorry to hear about your stroke and the difficulties you’re facing.
You could give our Stroke Support Helpline:0303 3033 100 a call, they have a wealth of knowledge and I’m sure they could help point you in the right direction for any financial help you may need.
If you need anything whilst you’re using the Online Community please don’t hesitate to tag me using my username and the @symbol.
Hi Anna,
I appreciate you getting in touch. I have spoke to Stroke Helpline and I’ve recently finished Emotional counseling through yourselves which I was very grateful for. It’s the system that is the let down really. As I don’t have any outwardly physical disability from my stroke they do everything in their power not to provide any support. I didn’t choose to for my life to go this way, but here I am. I’m hoping my recent diagnosis of CFS (chronic fatigue syndrome) with aspects of CSS (central Sensitisation Syndrome) holds some leverage. The last 4 years have been very difficult financially and even though I’ve worked my whole life out government think I choose to be like this and should be working like I once did. I share custody of my son and help my mum with anything I have left. Working 2 shifts a week is all my brain will handle. I pay physically (pain wise) and mentally (fatigue) but I enjoy work and it makes me feel useful. I’m a problem solver not a problem maker and anything I can do to help myself I do. This also goes against you with the DWP. I’ve been so beaten down with the whole process I’m very despondent and have not got much hope/faith in the system at all. I just go on what I can see/experience. I’m waiting to be reassesed but with no timeline…the worst thing is about the whole journey is that no one who can actually help gives a rats ass, it’s so ironic. PiP is a sore subject with me I’ve been tribunal and reapplied with 0 scored. The system is set up for physical disability or people who cannot care for themselves but there are thousands claiming who shouldn’t be and the ones who need the help and are genuine are often overlooked. I also have only recovered to how I am now through sheer bloody mindedness and to show my 12 year old that things happen in life to beat you down but getting back up again is what counts. It ain’t over til it’s over.
Thanks again Anna, I’ll keep your advice in mind,
Kindest regards,
Dan.
Sorry you have to laugh. It’s the only thing that’s kept me going. My personality/emotions changed and due to my other issues I lost my job via an occupational health assessment. I also lost my marriage. I’m grateful to be here to see my son grow up, but would be lying if I hadn’t thought it would have been better if I wasn’t. The last four years have been a battle. After having numerous tests including cardiogram, liver biopsy, MRI’s, CT’s, heart monitoring and be passed back and forward from department to department I finally managed to see a neurologist again. It’s taken me a year and a half to see one and four years trying to get recognition/help. DWP, NHS have been useless. I’m so sorry for how you have been treated and I can definitely empathize with you. I was a personal trainer/gym instructor always looked after myself and had a good diet. Don’t drink anymore, smoke or take drugs…why me? The answer is why not? My life has totally changed and I’ve had to adapt myself so I can utilize what I’ve been left with. I think this process will be a lengthy one. My only advice to you is don’t give up. I know it’s hard, make people listen…you’ll have to do it repeatedly but someone, some where will step up to help if you bang on enough doors. Don’t be polite, rattle some cages. If you any questions or want to ask me anything I’ll do what I can to help. Takecare, Dan
will handle. I pay physically (pain wise) and mentally (fatigue) but I enjoy work and it makes me feel useful. I’m a problem solver not a problem maker and anything I can do to help myself I do. This also goes against you with the DWP. I’ve been so beaten down with the whole process I’m very despondent and have not got much hope/faith in the system at all. I just go on what I can see/experience. I’m waiting to be reassesed but with no timeline…the worst thing is about the whole journey is that no one who can actually help gives a rats ass, it’s so ironic. PiP is a sore subject with me I’ve been tribunal and reapplied with 0 scored. The system is set up for physical disability or people who cannot care for themselves but there are thousands claiming who shouldn’t be and the ones who need the help and are genuine are often overlooked. I also have only recovered to how I am now through sheer bloody mindedness and to show my 12 year old that things happen in life to beat you down but getting back up again is what counts. It ain’t over til it’s over.
