Posts Tagged ‘Carers’

I had my first outing with my carer today, for a session in a local heated pool; something that I requested, since I felt that my joints and muscles would benefit from being in the water. She picked me up about one o’clock and we drove into town. The pool is right on the coast and the weather was glorious, not a cloud in the sky, so I decided to try and walk from the car to the building rather than use a wheelchair. It was slow going, but worth it to feel the sun on my skin and the sea breeze on my face after spending so long indoors.

The pool is situated at a hotel for people with disabilities or who are recovering from illness / injury and so it is very accessible. I had been worried about silly little things like how I would get into the water using crutches, but of course this wasn’t a problem! I was expecting a sunken pool with steps down into it, but instead it was raised with a raised edge about a foot or so from the floor. This turned out to be much easier than I’d thought, I was able to use my crutches to get to the raised edge and sit on it, then my carer helped to swing my legs round into the pool near the steps down into it. From there I was able to stand in the pool, using the handrail to support myself and bouyed by the water, until I was fully in.

The water was lovely and warm, so soothing. Really, it is the first time I have been fully submerged in warm water for over six months – even though I love my bath lift, you can’t get right under and have a proper soak. I didn’t swim as we decided starting off slowly would be best, plus I doubt I could have even if I’d tried. Instead, we found a float for me to use and I just bobbed about, flexing my joints in ways I haven’t been able to out of the water. Being in water is the perfect exercise for people with arthritis or any joint/muscle problems because the water supports you, takes the pressure off limbs and joints, and makes it much easier to take them through a wider range of motion than you would usually.

We spent about half an hour in the pool altogether, which was just enough to start with I think; any longer and I might have set things back. It was slightly harder getting out of the pool but still not a problem; we were soon sat having a warm drink outside and I was home by four. I’m due back with the carer on Friday but now that I’m a member, I can use the pool whenever I like and take whoever I want as my support, which is great. It means that, once I’ve built myself up a bit and no longer need the carers, I’ll still be able to keep up with the swimming exercises and carry on with my strength building plan.

I’ve been shattered since I came home but that’s only to be expected; plus it’s a ‘normal’ kind of tiredness from actually doing something for a change, which feels good. I always feel really cold and shivery after I swim, so I’ve spent the rest of the evening snuggled under a blanket to keep myself warm and cosy.

I’ll be in bed before eight methinks,


Some useful articles on Swimming and Arthritis:

Water Walking (Arthritis Today)

Swimming Exercises For Arthritis  (LiveStrong)

Swimming For Arthritis (RAGuy Blog)


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I seem to keep following up every positive post with a negative one, but that is just how things are at the moment – I am definitely on the ‘Still’s Rollercoaster’ and wanting to get off.

Last night was the hardest night we have had in a while. As well as the obvious hip pain, I had been seizing up more and more as the day went on; my elbows, shoulders, neck and collarbone were pounding and I could barely move my upperbody and then when the time came round to move me from our upstairs Snug to the Bedroom, I discovered that both my knees were so swollen that they wouldn’t bend an inch. Trying to get me up from the sofa when I was unable to bend or weightbear with either my upper or lower body proved extremely difficult and there were a lot of tears from me and looks of sheer panic from my boyfriend. Even once we managed to get me on my feet and changed, we had the same problem trying to get me into bed. I couldn’t move my limbs myself, couldn’t shuffle or roll or do anything you take for granted getting into bed; I really thought I was going to have to sleep back on the sofa.

So swollen and full of fluid it won't bend - you can see the difference to my skinny legs.

Somehow we managed to get me in the bed, propped up slightly on my back and with a pillow beneath my locked knees, which wouldn’t fully straighten either. I’ve been this way with my knees before (many-a-time) but can usually compensate with my arms; the fact that I felt every single joint in my body was giving up on me and swelling with fluid despite all the cortisone injections, is what made it so tough. I was in bed but I was now helpless, unable to move an inch without extreme pain, or to even shift the duvet, which suddenly felt like a ton weight. This is a scary feeling; I’ve felt it before but this is one of the worst times yet. My boyfriend was on call and would have to wake me to administer Oramorph each hour until I found some relief from the deep throbbing pain that had my body in a vice… but eventually, I did manage to drift off to sleep.

The point I wanted to make though, is how much this is all affecting my boyfriend too.  I am so lucky to have him; he’d do anything for me and that’s part of the problem – because he still sees me suffering, he feels like he isn’t doing enough to take it away.  He’s starting to look exhausted himself; the weekend away helped but now we’re back in the routine of him caring for me at home and working full-time it is taking its toll again.  Plus, he can never really leave it behind when he does go to work. He says I’m on his mind all day (not in the usual way unfortunately), he can’t concentrate properly and is making silly mistakes because he is so distracted and tired. He came home complaining of sore ribs last night and only remembered after a few hours of being home that he’d actually had a bit of a fall, which explained the pain. I mean, how do you forget something like that?

I worry that he might see me in a different light all of a sudden, in fact, every time I need help dressing or getting into bed, or off the toilet or when I move like the tinman; that he’ll be put off by the rashes, the Pred cheeks and swollen, deformed joints I keep presenting him with. We’ve been going through this flare at some level for two years now which has been bad enough, but this is the worst he’s ever seen me and I know he is shocked. But he is never anything but loving and supportive, telling me that we will get through this together. I know how much it must scare him though and it breaks my heart. I want to be able to reassure him that everything will work out and I do try. At least I’m lucky enough to be able to look back on previous flares and be reassured that thing did get better; for him, this must seem neverending and unfathomable. It’s almost as if I now want to get better for him more than anything else, to give him a slice of normality again and show that this isn’t how our relationship is going to be forever. I want to make him feel better.

Because it’s so so hard for him to watch me going through this… and it’s hard for me to know that too, but how do I protect him from it? I hope, that when we can put all this behind us to some extent, our relationship will be stronger for it, but for now all I can think is….

Cruel disease.


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