Tag: stroke

Well hello there. Yes it’s been rather a long time since my last post and there’s been 1 or 2 major events happen in that time.

9 days after my last post in 2020 I woke feeling odd, as if I was very drunk, (now, I may like the occasional g&t but drunk at 8am is not my style). To cut a very long and boring story a bit shorter, after laying collapsed and naked on my bedroom floor for 2 hours, my husband found me and called an ambulance. Although I couldn’t speak I did make him understand that he had better put some clothes on me before they arrived as no one needs to be greeted with that when they’re working 🤣🤣! It transpired I had had a massive stroke! Multiple CT scans, blue lighted to Queen’s hospital London, a Thrombectomy and I was discharged a week later, after making a 98% recovery. I still have weakness on my right side, my leg tires quickly and I drop things a lot, but other than that according to the hospital I am a walking miracle!

It has taken a long time to process what happened to me, the trauma that it caused my family and I spent more than a year thinking of it every day, worrying if if would happen again, making sure my phone is with me constantly ( I had left it on the bed when it happened and couldn’t get to it). Being without a phone would completely stress me out and I was constantly making sure it was charged and the ringer on. I spent a lot of time why I survived and what was my purpose in life, surely I was destined to do something amazing because I had survived. Eventually I have come to accept that there is no great plan for me, I am here just to keep doing what I’ve always done – see something good in every day, always look for the silver lining, to love and support everyone I know, to spread smiles and hope. To live my life to the absolute fullest, share my passion for creating with new people, support those in in the disability support groups I’m in and just to be me.

In other health news ( I thought I’d do this post by subject, rather than chronologically). My fibromyalgia has been getting steadily worse and I have discovered that I also have hEDS, chondromalacia patella, a particular type of bursitis in my hips/thighs and residual central focal disc protrusion with bilateral nerve compression – was that enough of a mouthful for you?? It was me! Ooh, I forgot some yes, I’ve also got TMJD (temporomandibular joint dysfunction 🤦🏻‍♀️ and a neurological problem yet to be diagnosed, but I think that may be stroke related). Last week I went to see a consultant to discuss having a spinal cord stimulator fitted to try and alleviate some of my back pain so I might be able to walk properly again, but sadly it’s not be. I’m a perfect candidate if weren’t for my stroke which has left me needing blood thinners for life. Apparently the risk of bleeding and paralysis is just too high. That dammed stroke, for which there was no explanation, has a lot to answer for. I have now exhausted all treatment possibilities and will just need to increase my doses of opiates unfortunately. That really was gut wrenching news. I had pinned so much on that potential treatment. I had gone in ready to fight my case, done my research and in moments my hopes were gone. That has been a tough one to get my head around but I’m getting there. I’m no worse off but there are days when the reality of living with all these conditions takes it’s toll and it’s hard to maintain a sunny disposition. My advice to you if you ever feel this way is don’t try to maintain it! Let the feelings come, examine them, accept them and move on when you’re ready.

In more positive news, Tom our eldest has moved out of home. He has a job that he started almost a year ago, which he absolutely loves. We found him a flat near enough to work so he can walk there and with a lot of support and help he is living independently. That is something we never thought would be possible. There have been and will always be bumps in that road but I’m so proud of him.

Son number 2 passed his A Levels with the grades he expected. He’s undecided abut what to do wit his life, so he’s currently looking for a job and learning to drive. Personally I had hoped he’d go to university and that’s still a future possibility. I think because I was expected to go to uni and didn’t, I would’ve liked him to go. I have no regrets though that I didn’t, as the path I’ve trodden has led me to the wonderful life I lead. I do go back as an adult in 2018 but the stroke put paid to that too ( starting to see just how big a deal that stroke was!).

Daughter 1 K is still plodding along and daughter 2 is about to enter her final year at school. She is dyslexic but doesn’t let it hold her back and these holidays have included lots of revision and reading new books.

It’s been a busy few for me. I’ve stared teaching beginners resin workshops. It seems everyone is keen to give resin a go at the moment and I’m completely booked up! I’m trying to be very sensible about and limiting myself to 2/3 classes a week with rest days in between. Invariably when I’ve taught a class in the morning I spend the afternoon sleeping as it just saps all my energy, but I love sharing my passion for creating with new people. It’s their joy when they’ve created something they didn’t think they could do, it’s infectious. Resin is very therapeutic and it’s not physically taxing which makes it ideal for me.

Saturday night I was at a family party and last night Robin and I went to see Coldplay at Wembley Stadium, both of which in my wheelchair. Today I’m exhausted an in a huge amount of pain. I knew this would be the result and I planned for it (no craft or teaching today, just rest, rest and rest). If you’ve read the few posts on this blog then you may have gathered that I’m all about living my life. I refuse to sacrifice things that bring me joy like teaching, concerts and theatre trips because of the very painful and exhausting pay back! If I tried to keep my pain at a minimum everyday I would never leave the sofa and that’s not a life I can live with. I try to plan and pace activities around rest and recuperation, I make the most of the access schemes and the accessible activities available to me. It’s not easy and it doesn’t always work (I didn’t go to the George Ezra concert I’ve been looking forward to for months because it was just too hot and the price was too high for me and without the love and support of my husband and family I’d struggle to do anything, but I only have 1 life and I choose to live it.

See you next time, hopefully next week xx