Down and now back up - September 2011 to September 2012.
Hello again from Sylvia Wright, I thought I’d better update everyone on how things are for me after a very difficult 12 months.
By October / November 2011, I really started to struggle so for the first time I couldn’t go to Florida with Steve and Marcus, instead I stayed at home. I was having more and more trouble swallowing; this meant I wasn’t getting enough nutrients and was losing weight I couldn’t afford to lose. I was also having strange dreams in which I went to heaven, nice! And hell, horrific! I don’t believe in heaven and hell but that’s the best way to describe how nice / awful these dreams were.
On top of that I had an out of body experience in which I went through the wall and could see my body, I’ve been trying to do it for years and this time I went onto the astral plain, it was surreal, I couldn’t handle it as I couldn’t create anything when there, which in theory you can do. I think the astral plain is a kind of heaven for me, at times I have wanted to go there, especially when I was struggling alone at night because you can eat or not there, with no consequence, its cool something I could get used to, I have sometimes thought I could happily die there.
I also have had sleep paralysis, which is when the soul leaves the body, but I can’t leave so I wake up, it’s all weird these dreams and experiences but I can’t really explain them.
What I do know, I can be ridiculously strong and will battle on whatever the odds. By new year everything was getting much worse, my dreams, my vision my health, everything. Vision wise I was starting to hallucinate see people who weren’t there coming towards me, it was scary.
I had thought it was a hard life last summer, hell on earth I called it, but that was nothing compared to this.
By February I was under 6 stone and couldn’t swallow, so I was sent to hospital by a GP who came out to see me.
Going to hospital & having a stomach PEG fitted whilst there saved my life. I now get my nutrition directly through a tube into my stomach, so I don’t have to swallow.
I came out of hospital in mid February and I started to turn the corner, initially it was very difficult physically and emotionally, not just because of the operation but because my grandad (Sidney Fisher) passed away, at a young 101, whilst I was in hospital and then my dad (Dennis Brown) passed away 3 weeks after I came out. Fortunately, even though it took a lot out of me, I managed, on consecutive days, to get to both my dads cremation, at which I spoke about him even though my speech is poor, and his church service. We now have a new family website on which they are remembered www.dustandstars.co.uk please visit it.
What is daily life like for me now?
I am in bed most of the time, in my room downstairs which Steve, my husband, had built last year along with a wet room next to it. I have needed and still need a lot of help, the help comes mainly from Steve but on 6 afternoons a week I have help from my fantastic PA, Salmoon, my brother Matthew often helps out on a Sunday.
What makes life work?
Peoples help & especially that of my PA, Salmoon, who I think sometimes, knows me better than I know myself, he takes a lot of pressure off Steve.
Being able to talk to different people, especially when they visit, be they friends or family. I find talking to my mum helps a lot, but I do miss my dads supporting words.
The PEG, I rely on it to help me live as I get my medicines as well as my Soya based feeds through it. I can still swallow to drink and eat soft food, so I can enjoy eating soft fruit, when my boy Marcus hasn’t eaten it all.
The Hydrant, a water bottle and tube I drink out of most of the day, I can use a thermos flask with handle when I am stronger in the morning.
My big bean bag, I can sleep better when my legs are in a tower over it, as they spasm less, it’s the spasms disturb me less.
I watch a lot of TV when I have less energy, but I have recovered enough that I often want to do more than this. Currently I’m also listening to music, teaching Marcus cockney rhyming slang and recording tapes about my life as I’m planning to write a book about it. I’m also starting to ask Salmoon to take me out into the local community more, as I miss meeting & talking to people in places like the local library. I keep challenging myself to do things, even small things, its amazing what you can do if you challenge yourself because you want to and or have to.
Life can be a struggle now but I’m convinced I put my current state off by a decade through my earlier regime of diet, nutrition, exercise and getting sunshine, until the baby bugs that came with Marcus knocked me off track, but I do not regret having him, he’s my ‘not so little anymore’ miracle, I’d do it all the same again in a heartbeat, overall my positive outlook is starting to return.
Enough about me lets talk about Marcus.
Marcus is just starting Year 2 at school having got a very good and very detailed report from his school at the end of Year 1, he's working at the national average or above the national average in all his subjects well done Marcus! It makes me wonder what job he'll do in the future.
Don't worry Marcus, you don't have to choose just yet and it doesn't have to be one of the above jobs either! If he had to choose today Marcus would probably choose to be a PA, because he really looks up to Salmoon.
It’s definitely been a tough year for him as well as for me, seeing me go down so low whilst having to help me during the night as well as during the day; it’s been a big strain especially as he can’t give up on me even if he sometimes wants to, I’m very lucky. It’s a strain also because its not just me that Steve has to deal with, he also has Marcus who relies on him, plus our Fairprice Mobility Scooter business to run.
Fortunately he has been able to take a couple of 3 week breaks to Thailand which has helped a lot! I think he particularly enjoyed the second trip on which he went round northern Thailand in a taxi, trying local delicacies like grasshoppers and seeing beautiful temples and countryside.
Steve was able to go to Thailand as well as take his usual trip to Florida last Autumn, due to Salmoon staying at our house whilst he was away, THANKYOU SALMOON.
Marcus went with Steve to Florida and went to school there. Marcus's 'sister' Tigga joined them there for part of the time.
In July I bought Steve a baby dinosaur. Why?
It was our 5th Wedding anniversary on the 21st and it was a reciprocal present for the big dinosaur he bought me for my wedding present. Here they are together.