Standing on the tram with my eyes closed: rehab weeks 3 & 4

I am exhausted!

When I started this rehab program I was told that by the week 4 mark I’d be likely to feel worse than normal. Well…they weren’t wrong! Whilst the program hours are less than if I was at work, it’s still somewhat tiring. But not in an overly bad way. It just hasn’t helped that I’m still juggling work alongside the program.

I think that for the most part my exhaustion is mental rather than physical. Not only am I trying to absorb as much as I can in the rehab sessions,  but I’m then getting home and doing 2hours of work before I head into the office the next day for a full day at work. Generally I have enough trouble getting to the end of the day and trying to remember what I’ve done, but with everything cramming into my head I’m mentally exhausting myself!

So a friendly tip for anyone out there considering doing the program…don’t overload your plate with additional work or activities. This just happened to be a main theme in week 4 of rehab.

All my life I’ve been told that I do too much. Problem is, I can’t see that. Financially I HAVE to work full time and the profession I’ve chosen requires me to work in the city which equals a long commute. Having been raised in the “country”, living in the city or suburbs closer to work is not an option!

Then there’s family. I’m a step-parent to 2 teenage boys. Whilst they and my partner are exceptional around the house with the cooking and cleaning, I still need to pull my weight now and then.

Socially, I consider myself to be a bit of a hermit. But in saying that, I do still get out occasionally.

Physically and recreationally I have theatre and dancing. I’ve cut my losses with dancing, but theatre is still there. I’ve learnt to cut back on the shows I’m in, but I think it’s safe to say I’ll still attempt 1 show a year. This is for my sanity, social life and of course my ego!

As far as I can see, I have an average and fairly well rounded life. As far as my friends and specialists go…they all think I’m insane in the amount that I do. The only way I can see a solution is if I create a daily timetable for myself so that I can ensure that each day contains rest and/or relaxation time. May need some more help here from my specialists, but I’m trying.

Going back to week 3, we talked “sleep”. I pretty much have a love affair with sleep and the science of it. Through a mixture of the week 3 classes and my own research I found that our brains don’t only put us to sleep and wake us up, but it also prepares us for bed, much like we do physically with brushing our teeth and getting into our pjs. Apparently as the sky gets darker, our brains start making changes to our body to prepare for bed. Not only do we begin to get sleep and start winding down, but our body temperature also drops. While we’re asleep our temperature fluctuates depending on what sleep stage we’re in. If we’re in REM our temperature rises, if we’re in non-REM it drops again.

Annoyingly because I have narcolepsy, my brain doesn’t do that properly. For example instead of cooling before bed, I burn up. I also get really hot and sweat a LOT in my sleep. I’m guessing I’m spending a bit too much time in REM sleep so my body isn’t given a chance to cool down.

So in a (large) nutshell…that was weeks 3 & 4 of rehab. Stay tuned for week 5.


Rebab Week 2: Hitting the reset button

I’m now at the end of week 2 of the CFS rehab program. Whilst this week has still been an introduction to the elements of the program, I feel like I’ve come out of it like I’ve hit the reset button on my life and habits.

A lot of this week has focussed on self awareness and beginning to set small goals. Through this blog I feel that I’m already aware of my condition and my physical, mental and social problems. Whilst I’m aware of them I haven’t really stopped long enough to fully absorb and address them.

This week I wrote the key issues down and cleared the slate, ready to work towards fixing each of these problems one achievable goal at a time. For the first time in my life I have a time scheduled to setting a single, clear goal. A goal I have to vocalise and share with others so that I have people to hold me accountable to achieving my goal. My biggest downfall in the past has been not having to be accountable to anyone but myself and letting my lack of self control hold me back. But now I have a support group who will act as my motivator.

Slowing down to a complete stop is not something society is good at. We’re always multitasking, always contactable, always on the go. It’s no wonder that illnesses like mine are becoming more common. My goal is to let it all go. To slow down. To stop. Something I think the world could benefit from doing.

Sick or not. Stressed or calm. I challenge you to take some time out every so often and just stop and reset the clock. It’s amazing how good it can feel.

Rehab & optimism

This week I started my 8 week rehab journey with the Royal Talbot.

The program started with a session explaining chronic fatigue and the program. Family and friends were invited to attend mostly so that they can learn a bit about the condition and understand what it is their loved ones will be going through over the next 8 weeks and how they can support them through it. Throughout the session there were a number of questions about chronic fatigue which I found a bit unusual. Over the years I have forgotten that not everyone with CFS has had it for over a decade, many have only had it for a couple of years. Therefore their research would be quite limited compared to my many, many years of reading. Mum, like me, has learnt quite a lot over the years about the condition, but my partner is relatively new to it all so I think he benefited quite a bit from the session.

Following this introductory session we were then taken to the gym to have our physio assessments. The idea of this assessment was (I assume) to find our baseline in terms of what we are currently physically capable of. Whilst I’ve always known that I’m flexible and was told last year that I had hypermobility, it wasn’t until this assessment that I got an indication of just how abnormally bendy I am. When your assessing physio says “WOW! You’re really bendy. You’re almost bent backwards in half” you kind of get the idea that perhaps you are sitting at the higher end of the hypermobility scale. Especially considering the fact that CFS and hypermobility often go hand in hand.

As I make my way through the program I will endeavour to keep track of my progress and make note of which elements from the program work best for me. Whilst the type of therapy used within this program is often questioned on various sites, when done properly I believe it can result in success. I’m not saying I’ll be cured or that I’ll feel any better at the end of the 8 weeks. All I’m hoping for is a new bout of strength to help me through each day.