With the words of Dr Mayadunne ringing in my ears I felt I had to try my best to change my attitude towards my illness. Maybe I was making myself worse? Was it all my fault? Could my attitude really be bringing my health spiralling downwards?
Then I decided my new mantra for life was going to be
I could do this !! Ehlers-Danlos wasn’t going to beat me!! So for the next week I got up every day, I got dressed and I pushed myself to try my hardest. I could do this, I needed some normality in my life, it would be so nice to just get up and not feel dizzy, to be able to drive to the shops and live life as I had done a couple of years ago. With Andrew recuperating from his surgery, it was a perfect time to attempt this positive attitude as he was working less hours so I was able to use his support and also leave the house with him for a couple of hours. It was nice to get out, still using my wheelchair though I wasn’t going to run before I could walk (literally).
It wasn’t easy, from day one the symptoms were still knocking me for six but using my management techniques I just persevered. By the middle of the week I was struggling but I kept pushing myself. I was also using my new pedals to try and give me some kind of exercise routine. I was giving this “new me” my all, attitude and body. As we hit Friday we had plans to see some friends for a meal out I was exhausted but was looking forward to seeing them so we didn’t cancel. It wasn’t going to be a late one so we headed off early for a couple of hours, as usual I ate a very small amount and to not irritate my stomach I chose a gluten free, vegetarian option. It was really tasty and I did enjoy it.
We got home and I was uncomfortable by the time we arrived, I tried to ignore the griping pain but it kept me awake quite a lot of the night. The next day was Valentine’s, Andrew had a big function, the plan was always for me to tag along just like NYE, you see as a DJ’s wife you either go along on these nights or you don’t see your other half. All day I was unwell, totally in agony, doubled up agony, enough to take more pain relief than normal, the question was all day would I be ok to go along? I really didn’t want to go but I felt I had to, so I just grit my teeth got ready, painted on my smile and off we went. The evening for me dragged, over the course of the night I couldn’t even hydrate as it was so painful. We finally got to bed at 2am once the equipment had been packed away and returned to the shop.
Once Sunday came around that’s when I realised I had crashed, the flare up was here, I had tried too hard. I couldn’t move, I was stuck in bed, was this because I had driven myself too hard or was this because of what I had eaten on Friday which is something I don’t usually eat? I just didn’t know the answer so all I could do was rest and hope this would settle quickly. Over the next few hours my gastric system was all over the place and by Monday morning I made the decision I needed to see a Doctor.
I called the GP’s surgery and went along she felt it was probably a reaction to the goats cheese that I had eaten, I was to now put it on my foods to avoid list. She gave me some tablets for nausea and just suggested not eating for a couple of days, giving my digestive system a rest, stick to the Ensure shakes, they would give me the calories I need for now. It really would be a case of waiting until my appointment with Professor Aziz though as I had exhausted the resources at our local hospital. She felt there was nothing more she could do.
I’m not sure what caused this flare to be honest, is it the food or was it me driving myself too hard? All I know is the positive attitude has actually not changed anything it’s been two steps forwards and three steps back. I don’t feel I had a negative attitude towards my illness I just need to learn to accept it more. In the meantime I’ve got to get over this rotten crash, someone pass the pain pills I’m in agony 😞