Paying the Price For a Taste of Normality

I haven’t really been posting much about how I am physically, the reason being that things have kind of reached an even keel and there is nothing new to say. I am still in pain every day, particularly with my hips, knees and left elbow, but mainly at a functionable level; I have the Still’s rash daily and almost constant fevers, chills and sweats. I also still have the rib/chest pain that I had prior to my last hospital admission and get quite breathless at times, but whether it is still down to the Pleural Effusion or my Spleen, I don’t know. I’ve also been getting a lot of bad mouth sores, ulceration and sore, gritty eyes for 3-4 months now.

I had my last infusion of Infliximab in August, which seems like a lifetime ago. No Biologics since, but I am waiting to start Humira, which is taking longer than expected. Then of course there is the appointment with the Bone Marrow transplant doctors next week. I’m surprised that I’m not worse off than I actually am and keep reminding myself to be grateful and make the most of what I can do. I know this reprieve is mostly down to the hefty dose of Prednisolone, but I think my ‘spoon’ management plays a part too:

For the most part of this year I have been pretty much housebound; my world is restricted to within these four walls and every other day a trip to the shop with someone or a walk to the postbox down the road, which is about as far as I feel safe walking on my own. Even in the house I’ve had the odd funny turn and found myself on the floor, or have needed to lie down to catch my breath and concentrate on slowing my heart rate down; simply because I’ve stood up for too long or bent over to pick something up (an action my body doesn’t seem to like at the moment).  I have plenty of things to keep me occupied indoors; at least I can do things, unlike earlier in the year when I couldn’t even get downstairs and relied a lot on carers. And I try and stay as mobile as possible within the house, making sure I walk about, get fresh air in the garden and limber up with my physio exercises…

But that doesn’t mean I don’t get fed up. It’d be kinda crazy if I didn’t. I mean it’s not normal for a thirty year old to spend so much time on her own and for such a prolonged length of time. I’m lucky that we live as an extended family, so that we do have other people around us to talk to every day. I look forward to them and my fiance coming home from work and to us spending the weekends together, but as the week goes on I get grouchier and grouchier.

A while ago, we decided to make a special effort to spend weekends out of the house. We’d go for drives and simple lunches, often just sat in the car with me wrapped in blankets, admiring a nice view somewhere. Recently though, we’ve been a bit more adventurous – we had the wedding venues to view and then this weekend we traveled down to Cheltenham to visit some friends.  We knew these things would take it out of me, but then I would at least be able to rest afterwards and hopefully there would be no long term effects if I paced myself properly. Sometimes, you just have to take the risk and find that it’s well worth taking, even if you do suffer for it a bit. Still, I was a little bit worried about three days away from home.

We traveled down by car on Saturday morning and it took about three and a half hours. It doesn’t sound like much, but if you have any experience of Rheum-type illness you’ll know that it is hard sitting in one position for so long, especially with grumbly knees and hips that feel like they’ve clicked out of place. Ironically, we stopped at the services for lunch and decided to take the lift – wise choice when you struggle with stairs right? Wrong! We only got stuck in the bloody thing for nearly half an hour, meaning I had to stand for longer than I’d ideally want to (standing is often harder than walking). By the time we were out, my hips and knees were shocking and I’d have been better off climbing the stairs. (Note: The lift did look to be made of wood, so maybe we should have realised using it wasn’t the best idea).

Once there, we met up with said friends and some others and I then had the pleasure of having to disrupt their plans (which involved walking everywhere and going to the next town over until 4am in the morning). I was met with blank faces when I tried to explain that not being able to walk far didn’t mean maybe a few miles, but to the end of the road, or that I wouldn’t be able to stay out until 4am unless they found me a cosy corner to fall asleep in. They made it clear that the local town was quite limited, but although I didn’t want to stop them from having a good time, I knew it would cost a small fortune for me to get a taxi back from the other place.

To them it must have seemed that I was finding a problem in everything; but to us, highlighting potential problems and coming up with a solution beforehand has become a way of life, to avoid any major fallbacks and allow us to get on with things.

But I hate it. I hate the fact that I can’t just go along with things, that I have to plan for every eventuality in advance and that it disrupts other people’s plans too. I hate the awkwardness of having to do so, without really being able to explain why to people that I don’t know well enough. I’m sure they think I’m just a whiny, boring party pooper. I’m not but the Still’s makes me feel that way sometimes and I worry that one day it will become permanent.

In the end, (thanks to my PHD in Rheum Planning), we managed to have a lovely evening that ticked all boxes for everyone. We started off in town, near our hotel, so that I could get back easily once I felt I’d done enough. Had an amazing curry and then went to a nice pub, where I could sit down but which also had a dance floor for the others. I did wish that I felt well enough to have a drink and a boogie, but reminded myself how nice it was just to be out for a change. By about 11pm I was ready to call it a night and so was one of the other girls; and as she drove me back to the hotel, the others (my fiance included) were just in time to get the bus to where they had originally wanted to go – so smiles all round!

Well nearly, I’d only been back at the hotel an hour or so when the familiar pains crept in and the shaking chills started, despite me burning up. All sure signs that I’d overdone things, maybe a little too much this time. I tried to get some sleep, while topping myself up with plenty of iced water and regular Oramorph – there wasn’t much more I could do. By the time morning came, I was numbed enough to be able to get out of bed and determined not to spoil the weekend; we did have to change plans a little but still had a nice day at our friend’s house, with me resting up on the sofa. They cooked us a fantastic Sunday dinner and we had a marathon X Factor session, catching up on the night before and then watching the results show. A perfect spoonie day really.

I seemed a bit better the next morning, made it down to breakfast and even managed to be ready to leave the hotel at checking out time. I agreed to a trip into town as it seemed such a waste to travel somewhere and not even see the place properly. We literally walked the length of the High street, stopped for some lunch and then walked back, but it was enough to soak up some of the Christmas atmosphere. Unfortunately, it was enough to set the pain and fevers off again too but I’d known it would do. Like I said, sometimes you just have to, even knowing there will be a price to pay for a taste of normality. There’s only so much mollycoddling and protecting yourself from the world that we can handle.

That’s not to say we should go mad and run ourselves into the ground, determined to plough on no matter what. That doesn’t get you anywhere, except maybe the hospital – trust me, I’ve tried it enough times. It all boils down to pacing yourself. If you know an event or activity is going to take it out of you, don’t immediately be put off doing it; instead try and prepare for it by getting plenty of rest beforehand and making time to rest and recover afterwards. I literally set aside days that I can do nothing if needs be. It can also help to increase medication for a short while (with the doctor’s permission obviously!) – a few days extra Prednisolone or Pain medication may get you through a longer activity such as a holiday.

And most of the time, these things are worth the price we have to pay. There are different kinds of benefits from having fun with friends and, to a point, keeping active too. As long as it doesn’t lead straight to flaredom, I don’t mind a little extra pain now and again, if it gives me a boost and keeps me happy. I mean, I’m just about recovered from the weekend now physically, but the sense of wellbeing will last a lot longer.

Does anyone else have any tips on how they manage ‘Paying the Price’ days and activities? What’s your favourite way to recover?

L