Tag Archives: Pain

The Log Is The Blog

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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.

Log Excerpt

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.

Log persistent

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.

Log Morning

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.

Log Sleep

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.

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This Week, I Have Been Mostly Wearing……..

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……..a grumpy face.

I have been particularly grumpy, actually.  Annoyingly, people have noticed and it’s not good when people start pointing this stuff out to you.  Now, I could put this down to my age.  I’m 46, rushing headlong into the long dark tea-time of middle age, but happy-go-lucky with it and not usually a grumpy old bastard!

Well, I have been this week.  My wife, my kids, my workmates have all had to put up with “Scott, the Grump Who Stole The Mood.”

It’s not been a great week.  After feeling quite pleased with myself in my last update, things just didn’t get back to normal.  I was waiting for my hands to recover and they didn’t.  In fact, everything just went a bit mental, sprinted quickly downhill and I really felt like a creaky old arthritic.

It’s very difficult to put into words what being a creaky old arthritic feels like.  The only way I can describe it is like being a really old car, that someone does their best to take care of but it still doesn’t perform quite in the way you expect, it limps along and you never quite know when it’ll break down – and when it does, it always gets going again but it’s just a bit ropy.  Like a bad Top Gear challenge.

Anyway, my creaky old arthriticness left me with shock, upset, disbelief, upset, anger, upset, tears, introspection, upset, swearing – oh, the swearing!  Now, I know what you’re saying.  This is all being a bit melodramatic and one should really get a grip of oneself.

Maybe you’re right.  I was, however, reminded of the dreadful flare up I had a few years ago that started with sore feet (which I ignored).  I put the feet down to lack of sleep, a bit of stress and worry associated with having two little 34 week premature babies in hospital, trying to see as much of them as I could and still do my job (saving my paternity leave for them coming home, see).

Last week, I had sore feet.  Also, my fingers weren’t settling, my right wrist was immobile, washing my hair in the shower was suddenly the most difficult and painful thing to do (not to mention towelling – I would have killed for a man-sized tumble dryer) and my knees were behaving like the unruly 7-year-old girls my tiny babies have turned into.  And my knees – jeez my knees!

Knees.  They’re funny things.  The most awkward of human joints.  Not so much a joint as a very ill-conceived mashing of unmatched bone ends and Forth Road Bridge suspension.  Doomed to failure!

When my arthritis has been bad, I’ve been able to feel the ends of my bones, especially the tops of my tibiae – it’s a particular pain that’s somewhere between an itch and being stuck with a needle.  I suddenly had that pain again and it began to worry me a bit.

Time to take action and I reached for the medication.  I had to.  I honestly felt like I had failed and last Sunday was a rotten day – in my head anyway!  By the end of the day, the drug was kicking in and I was beginning to feel much better.  I’m lucky, Adilamumab works so well that I can go for ages without it and it’ll re-establish within hours.

This doesn’t, however, make me feel better emotionally.  I haven’t been as clean as I could or should have been.  I have given in to temptation in the last few weeks and paid for it.  Maybe, I’ve reached the limit of what I’m able to do without the drugs?

My wife, who is my greatest source of encouragement and support, put it very well.  She’s pretty clever, my missus.  “You’re trying to undo 46 years of habit, Scott,” she said.  “Look at what you’ve achieved?  In the last 14 months you’ve gone from being on weekly injections and not feeling great to maybe taking them once every 6 or 7 weeks and feeling brilliant!”

She’s right and I think I’m probably being hard on myself.  She’s right about the habit thing too.  You know, I LIKE bread, I LOVE naan bread with a curry, I ADORE cakes, I’d KILL for a stodgy pudding with whipped cream and chocolate sprinkles.  Custard, ice cream, crisps, sweets, loads of beer and Pickled Onion Monster Munch!

I am finding this quite a challenge and it’s a battle with myself and myself only.  Eating Paleo is easy, having the will to put all the other crap aside is the difficult bit.  I’ve always been impetuous, quick out of the blocks to try anything, do daft stuff and I’ve never thought of myself as having much in the way of willpower.  I like that side of my character, though, it’s who I am.  In the last few days, I have been questioning whether I am capable of sticking to what I am trying to do.

Maybe it is melodrama and I should just get a grip, because I know what it’s feels like to feel great and this is important.  This is about being well, feeling great, making the rest of my life good instead of descending into ever more ill health.  I feel great when I eat clean and I have to hang on to that.

Best get on with it then!

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