It was my birthday at the weekend. A day of very mixed emotions. You are supposed to feel happy and enjoy the day aren’t you, but I couldn’t shift a low. Maybe it was the realisation that I never dreamt on my 40th that 7 years later I would be experiencing even tougher difficulties. Or maybe it was trying to push the thought to the back of my mind that I might have to live another couple of decades like this and “this” was not part of the game plan.
But then Sunday night as I nursed a dislocated shoulder and kneecap, I got to thinking about the events of the past 10 days and was forced to gain some perspective. You may have seen the post that I blogged as a result. My children still have a mother. My gay child is still alive. My child taking his mocks may not have done any revision….and he lives to see another exam!! Mum had cooked us a lovely meal and my daughter had made me a birthday cake – I usually make them for other people. Duncan has been away this last week on a school trip to Paris with fifty 11 year olds – yes, I did say 50! He said himself that he is helping at our kids’ old primary school more now than he did when they were there. It was a challenging week for us both, but in very different ways….
For Duncan, his biggest challenge was probably being in Paris and yet not a football game in sight. I believe Parc Asterix had more twists and turns than any of the matches to date though!! Does it sound awful to say that I was looking forward to having some time alone? Do you think that happened? How quickly does 5 days fly by, particularly when one child goes down with a migraine? For me I needed to prove to myself that I can still manage alone – or at least attempt to. I know that I have spoken before about the loss of independence being something that I have really struggled with. I had a meeting at the school and had to ask the head if he would be able to drop me home after. I knew that he wouldn’t have a problem with it – in fact another teacher dropped me back, and I only live across the road – but I still have a problem with it! Somehow the feeling of being unable to stand on my own two feet – literally at times – makes me feel deskilled. I waited until I knew that my 17 year old son was home one morning to help me out of the shower before I had a scrub and hairwash, and I promised Duncan that I would not walk about the house without a phone in case I had another fall and/or faint.
I managed though. Each morning my son and daughter got me up with tea and a lift up the bed, and I actually got up to see them off – a huge step forward since stopping the oxycontin as whilst on it I couldn’t open my eyes, let alone get out of bed by 8am!! The weather hasn’t been on the side of us spoonies as the damp increases pain, both nerve and joint in my case, and also places havoc with dizzy spells,POTS & hypotension for us EDS zebras. See this information sheet provided by the Ehlers Danlos support group (http://www.ehlers-danlos.org/about-eds/medical-information/autonomic-dysfunction/autonomic-dysfunction-sheet/), An ordinary shopping trip with my mum, to choose my birthday present, saw me almost on the floor in the M&S fitting rooms with dizziness and the attendant probably thinking I was boozy but too polite to say! I really could have done with that wheelchair that day….
I really missed Duncan and I do lose my confidence these days without him – I can’t believe that I am even admitting this as it is just not how I have ever been. I suppose that no one else really sees me at my best and my worst in the same way, can cope with my sudden loss of mobility or sudden uncontrollable pain surges – the kids do come a close second, but I don’t want them to. But I appreciated having an opportunity to try to be me again, although I am learning to accept the new me. Something I have done, on the back of my last post and the lovely positive messages I received, is to call the Red Cross and arrange to hire a wheelchair for our holiday. The next thing is to take advice from you guys about the best lightweight, portable wheelchair to purchase…please!
Meanwhile my oldest pal Karen saw this clip and thought of me!! Disability, what disability??