Saturday, 22 June 2013

My new lease of life: Poppy, maxfax & physio update

Just thought I'd do a quick blog as an update really.
Things are going amazingly well with Poppy! I feel like I've been released having been restricted by my naff body for years. I can now do what I like without it being horrifically painful, and don't have to worry about injuries and severe payback. I feel so much more alive, because I can do more, and because I'm not using every last drop of energy trying to get to and from Uni. Wonderful. I'm surprised that I'm seeing the results so soon- the pain in my legs has already significantly reduced. I've been out at a huge shopping centre all day today and obviously I'm exhausted but in a sleepy-exhausted way from all the stimulation as opposed to a painy-exhausted way. It takes quite a lot of concentrating navigating round everything and everyone but I feel so much more confident getting through crowds compared to when I was walking because I'm not having to worry about my balance or physically walking. I have had no difficulty getting her round the shops (with one exception- but I think that was the fault of the shop not poppy!), although it's strange having to find all the lifts.

I noticed people looking and a few remarks, but they were about how great Poppy looked as opposed to looking at me and wondering why I was on it. I feel so comfortable on Poppy already, it just feels right. Obviously I'd rather be walking but she really is the next best thing. I've had so many compliments about her! I feel like I tolerated being in a wheelchair whereas I am embracing using poppy, because it feels like a step forward as opposed to a step backward. She is opening the world back up to me.

In other news- I've been at the hospital again (Maxfax). I was pleased to report that my level of facial pain is currently entirely bearable. However, they want the pain to be stopped completely, ideally, to get my body used to not producing the pointless pain messages to hopefully stop them being made. I can see what they mean, but I don't know whether it's realistic. They're wanting to try a different anticonvulsant drug to see whether it's more effective for me, but they're going to check with the consultant helping with managing my CFS first, which I'm fully supportive of, because he has experience of what CFS patients tend to tolerate best. He might also say that he'd rather my meds were left alone for now, which I'd also be perfectly satisfied with.

Dealing with multiple doctors is a tricky thing. It's difficult to get them all working together, aiming for the same thing and not interfering with one another, but also not just passing you round in a circle with no-one dealing with any of your problems because they deem it to fall under someone else's remit. Thankfully my doctors work together well, and work well with me too.

It's hard being complicated.
You need doctors who both like a challenge, but accept that the challenge probably won't have an immediate solution. You are the jigsaw puzzle with pieces missing- and there's no immediate satisfaction to be had. The doctor can go looking for the missing jigsaw pieces, but they might not have even been produced yet, or they might be locked away somewhere they can't get to. The jigsaw is probably currently unsolvable and I can understand that completing half a puzzle really isn't very rewarding, particularly when every time you go back the pieces turn out to be in the wrong place and you have to start from even further back, or when the picture is fading and it becomes even more complicated and difficult to work out.
I know I'm a frustrating patient to work with, not because I'm not grateful or because I'm morose or argumentative, but because I'm the currently unsolvable jigsaw puzzle that nobody would willingly choose to tackle.

I've also had a really positive physiotherapy session. I said that I was concerned that my left foot is turning in increasingly frequently, and I'm putting my weight on the outside of my foot, presumably to stop my toes catching when my muscles tire. My physio watched the way I'm walking at the moment and could see the way the problem was developing and has given me some 'exercises' to try to work towards strengthening the muscles in my legs and hopefully correcting the current problems. He said that at the moment I'm positioning my legs and hoping they'll take my weight as opposed to my muscles working in the way they should. Thankfully he said he wouldn't take any more walking away from me because he realises that it would be really obstructive to me living normally, and with having reduced my walking as much as reasonably practical with having got poppy recently, hopefully that will help. We're working from a much better place to improve things now that I'm not absolutely wrecking my muscles every day walking to and from Uni, so hopefully the walking I do do can be made increasingly normal and less painful, and my body will cope better. Obviously eventually an improvement in the distance I can walk without significant deterioration would be brilliant.

Poppy has now been on and off multiple trains, in and out of the boots of multiple taxis, has been disassembled and reassembled lots and lots of times, has been around loads of shops, around hospital, in cafes, around Uni, in a lot of lifts, up and down loads of ramps etc- she has been brilliant!


  1. I really like the unsolvable jigsaw puzzle analogy. You are making me want to find myself a Poppy with how well it is working for you.

  2. It's so good to have you sounding so positive about the future hun! Was so lovely seeing you last week (and trying to avoid getting my toes run over!) xxx