In my last post, I shared the story of the latest visit to my rheumatologist, just after the New Year. I’m officially off the drugs now, but slightly nervous about not having that crutch to lean on now and again.
So, I decided to keep a daily log of what’s going on with my body and how I feel about it all. I imagined that I would be able to show a history of wellness of which I could be rightfully proud. I really didn’t expect my notes to be as surprising as they have been…..
…..or lead me in another direction. Intrigued? Read on…..
Here is an excerpt of the first few weeks. There is much more to the spreadsheet than this, with frank notes about how I feel, what I’ve been drinking and eating, etc, so this is just a small piece.
The first surprise was when I last took my drugs. I really didn’t think it was as long ago as the end of November. I hadn’t looked back and worked it out until now – I’m into my 10th week, which isn’t too shabby. In the last 18 months, the longest I’ve gone without medication has been, I think, 7 weeks.
I say ‘I think’ because I’ve never kept a log before – stupid boy! Please say “stupid boy” to yourself in the tone of Capt. Mainwaring. The exact detail of how long (if it isn’t 7 weeks) is lost in my misty memory of the last 18 months, so I’m putting a positive slant on this. I’ve had to remind myself to stay positive because I haven’t been feeling quite right, which brings me to my 2nd raised eyebrow.
As you can see, my fingers have been giving me a little trouble. It’s unusual for them to be this bad for this long and it has messed with my head a bit.
When I reflect, they’ve just been a bit swollen and a little sore and nothing too bad. I suppose, when you look at the log, I scored the pain low for a reason. They have been showing a slow improvement from 1 or 2 to <1 and 0+ over the last couple of weeks.
Yes, I even had to make up a 0+ rating as the swelling was there, but only just and the pain more like a discomfort. I’m at odds with myself about whether 0+ is the same as <1, but that’s just the statistician in me being pedantic. Pedantic, moi?
Anyway, I made it through a band rehearsal with no trouble and no after affects, so I think I’m just used to feeling well and could be overreacting a bit. It is still messing with my head, though, and I’m not usually a worrier. When I realised I’d gone 9 weeks, I started to think I might be pushing it a bit. My thoughts have drifted towards the store of drugs that I still have in the house………….but, no, I’m hanging in.
The next thing that surprised me was my morning stiffness.
Now, if you’ve just taken a mouthful of tea, try to swallow it. OK, regained your composure? Good.
Anyone with rheumatoid will tell you that a night lying still can make your whole body as stiff as a board. Mornings can be very slow and very painful – I’ve been there and it’s truly awful.
Doctors always ask about pain first thing in the morning and how long it lasts, so it’s an important factor in assessing how well someone is.
I’ve had hardly any at all, except a couple of times when my joints have twinged and given me a little bother, but not much to speak of. There have also been a few times during the day when random aches and pains have appeared, but also bearable and not that bad.
My mornings have surprised me, given the terrible sleep I have and this is the biggest revelation from keeping the log – sleep! Sleep is so important and I’m just crap at it.
Actually, that’s not true. When it happens, it’s great. I’m just crap at making it happen.
Over the last – I dunno how long – I have drifted into the habit of not going to bed. My wife and I have busy lives with work, kids, band and all the stuff you have to do to make it all hang together, so when it comes to settling down of an evening, we’re tired. My wife knows when she’s tired and toddles off to bed. I always say, “I’ll just watch the end of this and I’ll be up later.”
This is where it all goes to hell. Within about 10 minutes, sometimes more, I’m asleep sitting on the couch. Sometimes I’ll find my way into a lying position and wake up at 3 or 4am. Then I’m up! I may make it upstairs, I may not. At 4am our cats (we have 2) are quite active – they know I’m up and they make noises to be let out. So, I end up doing stuff and I have been known to cook a whole meal before everyone is up in the morning.
All this activity, when I should be in the deepest part of my sleep cycle, just keeps me awake. I can and do drift back to sleep, but then my sleep cycle starts over again and, by the time I should be getting up (about 7am) I’m being dragged from deep sleep again. This is just rubbish sleep!
If I lie on the couch, I get a sore neck and I’ve developed a painful right shoulder from having my head in a poor sleeping position.
None of this is good. We should sleep for roughly one-third of the day. On average, I’m sleeping for about one-quarter of my days, sometimes less.
There is compelling evidence showing that poor sleep causes systemic inflammation. For me, a rheumatoid arthritic, that’s really bad. Just Google ‘lack of sleep and inflammation’ and you’ll see what I’m on about.
Now I admit, I have played on the “Oh, I don’t get much sleep” thing and said, “Oh, ya, you know, I don’t need much sleep, right” as if I’m some kind of brilliant cool dude, but that’s just stupid. I’ve been stupid. It’s something I really have to change, which means a new routine.
Right now, it is Sunday the 3rd of February at 10:27pm GMT. I have given myself a curfew, “Don’t be downstairs beyond 11pm.” But, tonight, I still have some other stuff to do AND there are 2 episodes of the new Top Gear series to catch up on – this is my dilemma, see!
I’m still fighting with myself – just about different stuff now! I’ve only stuck to the curfew twice in the last two weeks and I’m going to fail miserably again tonight.
Yes, I know, I’m stupid. But, stupid or not with my sleep, I have been as clean as a whistle when it comes to food. I am giving myself the best chance I can to get off the drugs for good and I’m remaining stoic – I just have to do the same with my other routines.
So, without further ado, night, night.
- Are You Getting Enough Sleep? (markdking.wordpress.com)
- Research Reveals Alcohol Can Negatively Affect Sleep, The Duvet and Pillow Warehouse Comment (prweb.com)
- Watch: How Sleep Affects Your Memory (abcnews.go.com)