Archive for the ‘ pacing ’ Category

When Your Body Takes Another Road

Statistically, there will come a point in nearly all our lives when our body stops behaving in a “normal” way and doesn’t stop. Sometimes it’ll be sudden, some times it will creep up on us, and for some it will have simply always been that way. The thing that we have in common is a sense of loss for that normality, and a completely human need to grieve for it. This post is going to be primarily aimed at those that have acquired a long-term condition/impairment or had one worsen, as that is an area I have experience in.

Loss can be categorized as either physical or abstract, the physical loss being related to something that the individual can touch or measure, such as losing a spouse through death, while other types of loss are abstract, and relate to aspects of a person’s social interactions.

We all grieve differently, it’s far more complex than just feeling sad. While yes, some do feel sad, some also get angry, some withdraw, some cling, some seek justice, some seek to keep the memory of the past alive, some hunt for meaning, some wish to campaign for better, some choose to support others, some try to make a new normal as quickly as possible. Most will travel through a mixture those different states before “recovering”. Of course recovery is an odd one when what you are grieving is an abstract loss of normalcy. Gone is the “normally” functioning body and/or mind, gone is the normal way of doing certain things, gone are the “normal” expectations about how you fit into the world be it with friends, family or with your paid/unpaid work, gone are you hopes of being “healthy”, gone are the ways you learned to navigate certain challenges, gone are the dreams you had that relied on being able to function “normally”, and most hurtfuly, gone (or at least severely dented), is the idea that you are “normal”. Continue reading

Recovery Vs Management

When talking about long-term conditions/impairments there is a tendency to talk about the individual being on a road to recovery. Where recovery is a mystical place in which the individual will once more be “the person they were before developing a condition/impairment”. Now that’s a huge ask! If you were to ask a non-disabled person to be like the person they were five years ago they’d struggle a lot.

I think we can look at recovery from two different angles,firstly the removal of physical impairment and then there is a mental recovery, the idea that one will forget the rubbish they’ve been through with their health and go back to being a “normal” non-disabled person. At this point though I think we have to drop the pretence that recovery is ever going to get you back to how you used to be. It is more that recovery is the road to becoming non-disabled. Something that’s not possible for many of us, and for those in doubt I’m going to look at the idea of recovery from a physical and mental standpoint now. Continue reading

Diet Post 4: In Which I Discover The Obvious

I’ve hardly done anything over the last couple of months. That includes things as simple as keeping up with folks on Twitter and writing for this blog. I’ve spent some time of late navel gazing trying to work out what’s wrong. Is it campaigner burnout? Have I got a bug? Has my condition changed? Am I messing up my pacing? Is it a mental health flare up? Yet none of the above seemed to cover it. Then it hit me; the malaise started at about the same as this new highly restrictive dietary regime.

Newsflash: YOU NEED CALORIES TO BURN FOR ENERGY. YOU NEED ENERGY TO DO STUFF LIKE THINKING, TALKING AND STAYING AWAKE.
Every human body needs calories to survive. Even if you were just to lie in bed all day you use calories to power your organs and everything else that keeps them going. It varies from person to person depending on height and weight but there is a minimum amount of calories the body requires just to do the basics (often between 1600 and 2200). The value is called your Basal Metabolic Rate (BMR). Therefore, even if you sleep all day if you don’t meet the requirements for your BMR you will feel; tired, weak, your appetite vanishes and apparently your metabolism slows down. Most dieters work out how much their BMR is + the average amount they burn through exercise then subtract 500 from it. 
My BMR is pretty high because I am a giant of a human and this diet is leaving me about 1000 calories down on that figure everyday. It was leaving me 1200 calories down on it but I kept falling asleep in the middle of conversations so they gave me an extra 200 to play with. I’m still exhausted by everything and I feel like my limbs are made of overcooked spaghetti. I’m also starting to have some extra issues with my joints. 
Is it worth it? At the moment I tell you it doesn’t feel like it is. I went out the other weekend and ate food and felt so full of energy and life it was like I had been spiked with hardcore stimulants. Seriously. I was alert, attentive, happy and better able to manage my conditions.
I have a appointment tomorrow and I plan to chat to the dietician about it. If they want me to loose weight to see if that magically fixes me/improves my quality of life then that’s cool for them, but I can’t keep doing it like this.

Exhaustion & Pacing

I’ve been a bit quiet on here these last few weeks because I’ve not had the energy to do very much of note or to even write about anything. My desktop is awash with half started pieces that I’ve not been able to finish.

This of course is part of living with my condition. Most people when they look at me see my wheelchair or my crutches and assume lack of physical mobility is the most disabling impairment I live with. When this first happened I too thought it would be the most disabling impairment too. Looking back over the last few years I can see I was wrong, exhaustion is by far one of the most disabling conditions I have to deal with.

I can deal with not being able to walk without pain by using a wheelchair. I can deal with not being able to bend by using grabbers or asking for help. I can’t grab a ‘aid’ to help me when I’m too exhausted, both mentally & physically, to cope with talking, typing, watching a DVD or simply sitting up-right. The lights are on but no-ones home and that is so disabling I can’t really find words to describe it, yet I’m going to try in this post.

Before I became disabled I didn’t really feel like there were limits on the amount of energy I could draw from (have a read about Spoon Theory analogy if you want an easy to digest description). Now things have changed. Personally, I find there are quite a lot of things that drain my available energy;

  • Pain – being in constant fluctuating levels of pain (varying between 5-8 on the pain scale) everyday saps at my reserves.
  • Severe Pain – when my bowel gets obstructed or partially obstructed the agony (between 7-9 on the pain scale) drains my reserves really quickly.
  • Hiding the pain also saps at my reserves. You may ask why I hide it? No body really wants to be around someone who can only say “It huurrrrtttts!” all the time. Sure, it’s fine with an acute issue like a sprained ankle. Less great with a chronic condition. 
  • Stress – too much stress causes my PTSD symptoms to flare up, it also causes me to tense up which increases my pain (which increases my stress… you see the cycle here). I also have a lower tolerance for stress before it all gets too much. Things I find stressful include dealing with people, being in a big crowd, raised voices (especially male ones), anger (be it overt or covert), feeling trapped, not being able to keep the house clean etc…
  • Sickness – throwing up drains my energy. Simply feeling sick does too.

There are other things that do it too, far too many to list on a blog entry I should have finished days ago. Regardless, I spend much of my time too drained to get anything much done. I’ve been writing this tiny post for three days now.

I deal with it by pacing, working out how much I can or can’t do and applying it to my daily activities – asking for help and support or using aids to do the most draining ones and stopping myself from doing things that will wipe me out. I know the walk to and from the kitchen costs me so if my partner is around I ask if he can do it instead. That way when he isn’t I have a chance of managing it. It’s painful having to always ask others if they can grab something for you or make you a cuppa when you fancy one but ultimately it’s less painful than doing it all then ending up trapped in bed writhing in pain (and needing them to do everything for you, rather than just grab a cup of tea).

I’ve still not learnt to pace properly, I still do more than I my body can cope with regularly but I’m learning and that’s what’s important. If you’ve got any fab pacing tips I’d love to hear them in the comments.

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