A lesson in over doing it!

I’m planning a proper blog about how my elimination diet has gone/is going… But for now just a quick note on that. It seems to be going pretty well!! And I couldn’t be more pleased!!

Now… A little reminder to listen to your body!! Yesterday, joints felt good, but generally I woke feeling pretty tired, at 6am and I had had a busy week so far… But once I was up and dressed… I ended up mowing the lawn, doing a big shop (to Costco for baking ingredients, and farm shop for special stuff), then when I got home I spent nearly 3 hours stood in the kitchen preparing lots of fruit and meat for the days ahead… In an attempt to make life easier for the following few days… Forgetting about today!! 17.00 came, and I finally sat down…. Uh oh! Swollen knees, fingers and a very painful right shoulder and neck… Off to bed at 21.00!!

I think my knees were down to 1) being on my feet ALL day! 2) wearing shoes that I’ve not worn for years due to my feet being to swollen!!

My shoulder and neck was due to lifting the mower tub into the compost bin… The lawn seriously needed a mow, so I did this A LOT!! and the grass was a bit damp!

And hands just down to everything, the mowing, the chopping, the kneading etc…

I’m pleased that I felt capable of all the above, but I knew I was tired, and I didn’t rest, I certainly didn’t pace myself… And I paid for it! Today my knees are much easier, but still sore right on my patella’s. Hands gradually easing, shoulder gradually easing….. Today’s to do list….. Well, it’s long, but I will just get what I can do done!

Priorities… Baking (which I am trying as we speak)… As it’s my birthday tomorrow!!! And as much as I’m loving my new diet… I need something delish to celebrate with!!

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To cycle or to row… That is the question!?

21/05/14

So, in my last post I stated what a poor patient I was to myself as a Physio, and that I intended to improving my pacing.

Well, the following day (Tuesday) I had a day off work to go to my rheumatology clinic appointment ( the hospital being a 2 hour drive away). Of course that was a good day… But why? Because I got up, had breakfast, cleared the kitchen, and went upstairs for a shower… No rush, no haste. That extra long shower eased so many aches, I then attended my appointment had a good chat with the doctors and a management plan was created for the coming 6 months, I was happy. I had their number if there were any problems. I drove home.

After having a bit of food, I took my own advice and by 15.30 I was out in the sunshine on my bike. I only did 30 mins, two short laps of the local village, but I loved every minute! The wind in my hair, the sun on my skin, the muscles in my legs working. Yes my knees hurt a little, and my wrists and fingers made changing gear and braking a little tough… But that’s what exercise does to you, you don’t focus on the pain, you feel the enjoyment… Granted if it had been a miserable day and I was on an exercise bike in the gym, I don’t think it would have had quite the same effect, but thankfully it wasn’t and I wasn’t!

So, Tuesday was a good day, why? (Oh I also took the dogs to agility, but that was pushing it a little too far, so Andrew did the running around for me! I’m not superwoman… Yet!)

Was it because:
1) I was off work? It certainly relieves a little of the stress of a morning, even if I don’t feel stressed most mornings
2) I had a long shower (10 mins-ish, but I wasn’t clock watching because of 1)!!!
3) My clinic consultation felt worth while, I had a plan, and felt supported
4) I paced my self through the day, not overloading myself with ‘to do’s’
5) I got out on my bike and released all those endorphins that have lay dormant in me for so long
6) It was sunny

It could have been any of the above, and more likely a combination of all of them, but, that’s not a typical day for me, 5 out of 7 days I’m in work, the luxury of pacing such as the above isn’t afforded to me. But, what I am making a mindful effort to do, is give myself time, don’t stress about things that aren’t getting done (they will do eventually… I hope), and drip feed in a little more exercise here and there….

So what happened today, Wednesday…. Well, the first difference is, I have started a short descending course of Prednisolone. 10mg today and for the next 3 days, descending by 2.5mg until nothing, 16 days in total (following on from the clinic appointment on Tuesday).
I also retuned to my usual 8.30-5(ish) job on the ward. No huge changes to pain early in the day, but definitely an improvement as the day progressed, which can be very normal for me, as moving does help enormously, until i stop!!
It has been a glorious sunny day all day, so I have been dying to get into the garden… But I also felt I aught to do something exercise wise. I could have convinced myself, that as I am pacing myself, there would be no shame in resting today, and returning to it tomorrow, however, I am 29 with a previous level of fitness that means I could easily do a little something (stop talking yourself out of your own advice!).

To cycle or to row? It’s been hot, the rower is in the gym… It is stifling in there… Back on the bike it is… GOOD GRIEFE my bum hurt! I had to do the first quarter in standing! But it eased, it got easier, I could sit for short periods, but I decided I’d only do one short lap of the village…. My knees felt better, my wrists felt ok (still twinging), but I was determined not to over do it. The joy I got was still the same though 🙂

Since my sore bum shortened my ride, I decided to do a short burst on the rower too… My aim is to maintain strength and tone in my arms and back, not to become the next Mathew Pincent, therefore I did 50 rows in pronation and 15 in supination (to get my biceps… I had aimed for more, but my right wrist has been so bad I seem to have lost range in supination, and I found it particularly awkward, something else to monitor and work on).

But… As any poor pacer/patient would do, why stop there?! The garden is getting wild, so I whipped out the mower and did the grass, then hung out the washing and put on a white load…… Well, in one sense it’s pacing, they are all different activities using different muscles and different postures, not one of them took longer than 30 mins in total…. Let’s see how I go for the rest of the week!

So, on reflection, what has changed….

Yes Prednisolone does work wonders for me, and always does, there are side effects possible when pregnant, but they are small, and on the whole better than other medications, plus a mobile, stress and pain free me must be kicking out more favourable hormones for mini me?! – But could Prednisolone really have worked so quickly…. I look at my joints and I’m inclined to say yes, I guess we will see in 8plus days time when the dose reduces to what I have found in the past to be non therapeutic for me.

Is it my determination to act? To take a stand and do something active about this pain that limits me? I know pacing itself doesn’t ‘work’ after two days! So how much of the change about me is psychological? I’m afraid to say it is probably a pretty huge proportion, again, we will see in a few short days as my Prednisolone reduces, if I gradually get worse it’s the drugs, if I remain well it could be the drugs, it could be my mental attitude and my mental state. Only time and effort will tell. I don’t doubt there will still be tough times ahead no matter what, but there will be good times too.

Peaks and Troughs of Activity

As a physiotherapist I always prided myself on my ability to empathise with the patient. To be able to talk on a level about chronic pain and pacing, the do’s and don’ts, the reasoning behind it, and the need to avoid peaks of activity followed by troughs of inactivity and pain and the downward cycle of deconditioning.

I felt able to use myself as an example of it working, and of pacing’s benefits. But perhaps I never appreciated how much of a pivotal role my pain management played in my being able to achieve appropriate pacing.

Of course, I knew how important pain medication and pain management was with pacing. I regularly encouraged patients to go back to their doctors and consultants to discuss better pain management. But I think I lost sight of how much my medication was helping me! Until I had to stop taking it!

Over the last year, since stopping the methotrexate and just being on the Etanercept (Enbrel) my pacing has been POOR! My lifestyle and my pain levels don’t match well at present, and it has taken me a whole year to be able to look back and appreciate this… I am a rubbish patient, I have always been a rubbish patient, I have never taken my advice well, but now I wonder, if it’s about time I started to listen to myself.

In the past year my activity levels have plummeted due to the pain and exhaustion of a full day at work. I have managed little more than two dog walks a day, and that has now dropped to one more often than not. I have deconditioned. I am now feeling the effects of the deconditioning – Right Achilles tendinopathy, Right anterior knee pain, the list could go on – hills and steps have become my nemesis…. I’m 29!!!

For the last two months I have been giving myself exercises to combat these secondary problems… but like a bad patient I have done them infrequently, and therefore they are useless.

I feel that at the moment, work is my peak of activity, I have exhausted all I have by 4.30pm, and my trough of inactivity is the evening. My feet throb from being stood up all day – I want to sit down, then I seize up and struggle from the chair, my hands scream from holding, supporting and facilitating people all day – I don’t want to hold or touch anything in the evening. And the rest of me aches and feels heavy and difficult to move.

I know however, I have to start doing something to break up the inactivity of the evenings, I have loads of options easily to hand… cycling, swimming, rowing – all low impact, with the benefit of strength and cardiovascular fitness. Of course I know this! I’ve suggested those and many other activities to hundreds of patients… I’ve just got to listen to my own advice!!

So… the plan is… well, the plan is still forming! But I’m going to, I have to, get more active in the evenings… Ideally I’d get to rest a little in the day, but that’s not going to be possible, so instead I have to manage my time in the evenings better, relaxation can’t be on the settee… as I can’t get up again, and going up stairs to bed becomes a 10 minute ordeal. Perhaps going swimming, or pregnant yoga, or out on the bike… my problem is, I’ll miss my pooches, I have to cook dinner at some point… and will I burn myself out? People keep telling me that as a pregnant woman I should be getting some rest… it’s going to be a work in progress!

In the meantime, I’m waiting for an appointment with a colleague, so I have someone else telling me this stuff!! It’s a lot harder to ignore someone else, it’s very easy to talk myself out of doing things! Although that’s a trait I am working on.

And finally, what better motivation to stay in shape and find ways of pacing myself now… because in six months’ time, I’m going to be looking after someone else too, time management is going to become imperative!! And I know myself, if my muscles weaken, and my joints don’t get their support, on top of additional weight (both baby and the odd cake!) it’s only going to make my life harder!!