To understand me and the changes to mine and my family’s lives you would have to know that before the brain haemorrhage, stroke and children I was a solicitor. I worked at a big law firm and there is even a photo of me with Cherie Blair at a reception at the House of Lords – so it’s ironic how things have worked out.
I gave up everything happily to have children. Before all this, I was a very active mum. I went to the zoo at least once a week and I always had a full calendar of activities. I loved my life.
Why I want to tell my story?
- I hate being bored. I hope that someone else reads it but I need to be occupied!
- I want to help other disabled people- I imagine what has worked for me would work for some others.
- It’s good for me to have something to think about other than my own slow recovery
- I want people to think about critical illness insurance! It’s not because I’m selling it but If you have already had a stroke then I appreciate this might be too late but carers and loved ones should think about this in case something similar happens to them!
- I think it will hopefully be interesting to others.
I am 34 years old, a wife to Richard and mummy to Ava and George. I was a lawyer but have been a stay at home mum for nearly nine years now, which is slightly scary. I have loved it and I would count it as a job because I have worked harder at home than I ever did anywhere else
What happened to me? I was going to say that I have recently become disabled. It’s actually five years ago now so it isn’t that recent, but it still only feels like yesterday that I felt I was totally “normal” (if there is such a thing). I had a burst AVM. A lot of other people have explained it a lot better, so I am not even going to attempt if you want to know more type ‘Arteriovenous Malformation’ into any Internet search engine.
Suffice to say I was born with it in my brain. I didn’t know it was there and it bled causing a stroke. It has caused an awful lot of trouble (although I think this might be the understatement of the year!) although I don’t like to dwell on it. It did happen. There’s nothing I can do about that!
I didn’t keep a diary of being in hospital and to be honest I don’t think it would useful to me to share those memories. If you have had a stroke you know how life changing it is, but if you haven’t, you could probably imagine what is like then but please magnify it because I promise it would be worse!!
Before I got unwell I had a completely normal day and I just went to bed one night and woke up in hospital! I spent my 30th birthday here and it just didn’t and still doesn’t feel real.
I say I am now happily unemployable. I did enjoy being at home anyway, but it’s just the boredom I can’t stand. I walk with a walker, I have really bad double vision (made a lot better by a coloured contact lens – but that means I can only see out of my left eye) and I really struggle with verbal communication. I can say what I think but I can’t think or speak as quickly as I used to. I also sound different. The problem with dictating everything is you know exactly what you should sound like! Also, because I have something called ataxia I shake slightly. This is not too noticeable, but it means my handwriting is really poor.
The initial terror that I was going to die (I had this for six months before I had my last, and rather big, operation) has now given way to learning to live with things now that they have changed.
I think the best advice to everyone and anyone who hasn’t had a stroke or other serious illness is to check your insurance as you never know when you are going to need it. I certainly didn’t ever think I would.
I’ve been really shocked at how little support I get. Social Services now pay for two ladies to help me with my children for 18 hours a week. This is great, but it did take three years to get help! I contacted lots of charities to help me financially, but I have was told accessing my garden was “a social not medical problem” or I could only be loaned me money in exchange for a charge on the house, which I was not willing to give. I had to do all the work myself.
I had my last and very scary operation in February 2014. I don’t like to dwell on it but I had to decide to have surgery (with all of its risks and pain) or to have an alternative treatment with no immediate risks but it would have hung over me for four years, with no guarantees it would work and being at risk all the time of a further haemorrhage (which could have been fatal).
I went for the surgery as I couldn’t live with the uncertainty. I just wanted it over. It sounds like no choice now but having to look at my children whilst I made the decision to have more surgery remains by far the hardest thing I have ever done. However, it went well and I have no more surgery planned.
I had lined up a job for one day a week but lost that when all this happened. To be fair I couldn’t have done it. It would have started when I was in hospital in Cardiff and very unwell. I was going to teach law and I don’t think I’m cut out for teaching anyway so I think I may have had a lucky escape!
I don’t want to be all negative. Yes, it has been unbelievably hard at times and yes, I get very frustrated. But every cloud has a ‘silver lining’! I lost three stone! I got to book early for breakfast with Santa in 2016! I get to go to Wales and get great parking for free with my blue badge. I don’t have to do cleaning or ironing myself anymore and I have two wonderful PAs (who are more like friends) who support me and do all the stuff I can’t!