A new chair

I’m getting a new manual wheelchair provided by the NHS.

I had an assessment with a rehab engineer and an OT today.  There was some discussion and after a few minutes I said “So I am getting a new chair then?”

And the engineer who is someone I’ve seen in clinic before said “Emma, the only reason we’re letting you go home in that chair is because we don’t have anything here to lend you and we can’t send you home without a chair. If we had something else you’d be in it.”

They also got a new type of cushion out for me to try and the OT declared she didn’t want me taking my old cushion home so sent me with the trial one. That’s a Qbitus Q-Care Integra 2. I’m to ring her tomorrow and say if I want to keep using that or to have a new one the same as I had which was a Jay 2 Deep Contour. Currently undecided on that.

So I’m getting an Invacare Action 4 – this is next one up from the Action 3 I’ve had since 2009 but looks all but identical. The change is due to my weight. I will have new lateral supports and solid back, identical to what I have on this (Jay J3 backrest). Something was mentioned about a higher back but I lost track of what was decided. Slightly deeper seat and elevating leg rests in the hope that will help with both spasms and lymphoedema.  It’s coming in my preferred black.

I knew my chair was desperately showing it’s age but it was working. I had been relatively sure my cushion had had it.  But I really hadn’t expected them to be completely horrified by the state of things.  It’s been made very very clear by both of them that I need to be keeping in much better touch with the hospital based wheelchair team and that this replacement should have been done about a year ago. Although I did tell them that last summer I saw one of the mobile team for a repair and commented about a new one but he basically said budgets meant they didn’t get replaced until they couldn’t be repaired.  

I’m very excited for my new chair – they are marking the order as urgent but no one is sure if that will make a difference. Still hopefully by August I will have it.

Random Bullet Points of Life

For the small things worth mentioning but probably not worth a blog entry of their own

+ The furosemide for my lymphoedema is working and my feet are improved. Still obviously swollen but less so and my trainers fit better (but are still out of shape). I’m pleased. Blood test tomorrow to check the meds haven’t messed up my kidneys (and at my request check my iron)

+ I got sailing for the first time in several weeks last night. I really didn’t think I would based on what they were saying in advance about the weather but I was bored so we went to see. Even when we got there I wasn’t sure but the wind dropped down and I got out for about 45 minutes. It was good. I took a couple of pics to do a “spotted at the sailing club” entry but when I looked back at them they weren’t great. I put them on my instagram though.

+ I’ve been trying to do more with instagram actually rather than just taking pics and doing nothing with them after I accidentally lost loads of pics a while ago – wiped what they were on thinking I’d backed them up to my PC then discovered no they weren’t. I’ve got several pics I love on there.

+ For the first time in ages I went looking for a new layout for this blog and found one I really love.

+ My sister’s hen do is this weekend. I’m looking forward to it.

+ Bake Off started again this evening. I liked it. Part of me would like to see about going to a filming of An Extra Slice again, especially as it’s now being filmed at Waterloo so I could take my powerchair. But I won’t because they were rubbish at access when I went (didn’t have wheelchair spaces as such, made my friend sit separate to me and kept asking me to transfer) and I mostly just want to see an episode before everyone else again.

It’s Okay

For me blogging is an outlet. And it’s a pretty good one.  I’m generally very open in what I share about myself although I try and protect other people’s privacy.

I’ve been blogging for fifteen years and in that time how and what I share has changed.  I’ve been quiet on my blog lately because that seems to be going through another change. Not really a welcome change. I welcome comments and questions and responses to my blog – the majority of which come through twitter nowadays. That’s brilliant. But there are some people who seem to read a completely different story to what I’m writing – One time someone took a mention of a medication to mean I was really ill and sent an email they were coming round to look after me. Luckily I was able to stop them. I don’t want to stop people reading my blog but it’s stressful if stuff like that happens.

So I haven’t felt as comfortable blogging. Almost as though I’m losing my blog because it can no longer be my outlet. I hate that and I don’t want it to happen. And now I have a piece of news that previously I’d always have shared. I want to share it but before this happened I told a friend I thought it would happen. It’s not upsetting news but as we were sat having our drink in a crowded cafe they cried.

I was diagnosed with lymphoedema this week (NHS choices link). I’ve been describing it as a complication of my having CP but it’s more accurate to say it’s a complication of my being a wheelchair user. I just have the swelling.

I’ve had obvious oedema in my legs for years – even in the winter although it gets worse in the summer. And this year it seems to be a lot worse and several people have raised concerns to me and suggested I needed to see a doctor/get meds (it was my saying I thought I might need meds that upset my friend). I wasn’t that concerned because I pretty much knew that it was a wheelchair thing. But it was bad and it was getting stressful with all the reactions so I did go to the doctors.

She diagnosed it as lymphoedema and said that as it’s not life threatening and it doesn’t usually bother me there was no need to treat it if I didn’t want to. We talked about my options and at the moment I’m declining the referral to a specialist for various reasons. I am however having a month’s course of diuretics (40mg of furosemide daily). The dr isn’t sure it’ll work for it but said it’s worth a try. If it does work I’m going to have a second month of them. So far I think they are making a difference but it’s too soon to know for sure.

Having lymphoedema isn’t a good thing. But it’s also not a bad thing. I need people to understand that. I’ll probably have it to some extent for the rest of my life. That’s the luck of the draw when you’re in a wheelchair all the time. And that’s fine. I have meds, I have choices and I’m happy with how things are. It’s okay.

I’m going to tell you this. Dealing with it is probably easier for me than writing a blog about it.