Living in Limbo: My challenge for 2015

Today has been a big day: I’ve survived two hours of shopping in the January sales with my husband and daughter!
You may think this was merit enough for praise but the start of a new year made me reflect back on 2014. The shopping spree may be a signal for cautious optimism. For many, new year is the chance for new starts, new goals and new challenges. None of these are friends of ME. My challenge is to keep listening to my body and be patient with the ups and downs my recovery brings and the limbo it puts me in.

September 2013 saw me crash out of normal activities when I was hit for the second time with ME I have blogged regularly about the condition but in a nutshell it means Myalgic Encephalomyelitis:
My = muscle
Algic = pain
Encephalo = brain
Mye = spinal cord

After 15 months I am finding that I am getting more ‘good days’ like today, that enable me to do more normal things with occasional glimpses of my old self starting to return. Others must have noticed a change as people are starting to ask if I’m better now?
The answer is both yes and no! In relative terms it’s a resounding yes, but in absolute terms it’s a definite no. I can only do the small ‘normal things’ after lots of rest before and after events. I still suffer from Post Exertional Malaise although the pay back isn’t as bad as it used to be and recovery seems to come round quicker. Pacing stills robs me of spontaneity and commitments and my life is still a shell of what it used to be and recovery still feels precariously balanced. This is the new limbo that the illness is taking me into. Fatigue is now my biggest problem but weakness, restless shaky limbs, limited concentration and memory and irregular heart rate and breathing still like to give me a good beating.

The early days of my diagnosis were grim. Physically getting out of bed was an achievement and walking downstairs was a huge accomplishment; having the cognitive skills to unload the dishwasher was an achievement and being able to write a full email or read a book was a huge accomplishment. They were grim, dark days that seemed to go on forever without respite but they were at least uncomplicated in the fact that there were very few choices.

As time moved on, getting out of bed became taken for granted and simple, new opportunities like meeting friends for coffee came along. The noise of coffee machines and background chatter made the once simplest of pleasures initially a painful and exhausting experience. Over time, this has become one of my simple pleasures again (particularly now my local has invested in redbush tea!)

My ME fluctuates. I am always very grateful for my good spells when they come. (Better days means that many of my symptoms have subsided but I’m never able to shake off the fatigue) However, my husband normally groans when I enthusiastically greet him with how much better I am feeling as he knows a fall is imminent! He is usually right, despite all my careful pacing and rest even in my better days.

I never did like limbo and uncertainty but as my illness is improving I’m finding this is currently my biggest challenge of all. My faith gives me reassuring certainty and hope but the physical struggles are still the same.

Shopping with my daughter has only just become a possibility again, as has short walks with my husband. I could of course have opted for a wheelchair to make these possible much sooner than this (once I had overcome my noise and light sensitivities) but I chose to sit it out waiting for good days to come. The closest I came to it was for a pre-booked visit to Harry Potter studios last Easter. I certainly didn’t want to ruin the kids day by needing an early exit on this trip. I chose to rest for a week beforehand, use every possible bench on the way round and ended up in bed for 4 days after!

I’ve recently done a 360 survey as part of a course I am doing. Again, I was struck by how hard it was to find the real me. Questions about my reliability, drive and activity out flanked me. My ‘real’ self would have scored well. I also believe my future self will also be ok but my current self told a very different picture and I was in limbo again. Don’t get me wrong, I am very relieved that I’m not permanently disabled or housebound and without wanting to complain, the truth is the fluctuations are difficult to anticipate and negotiate and sometimes the real me gets lost in the confusion. Which is the real me? The able bodied me, or the disabled me? The organised me, or the forgetful me? The exercise junkie me, or the exercise intolerant me? The help-anyone me, or the self-preserving me? The perfectionist me, or the it’ll do me? I can’t let go of the old me for the hope that it will return. I’ve had glimpses already and have every faith that there is more to come.

I like to be positive; I like to show people what I can do; I like people to tell me how well I look (often, the worse I feel the heavier the make-up goes on!!) I like to escape being bound by the chains than ME likes to keep me in but I’ve also learnt never to turn my back on ME. Accepting my limitations is an ongoing and ever changing challenge. The persistent weeds of my illness can still consume any green shoots of recovery and simple tasks such as walking up and down stairs can quickly become a challenge once again.

When my children were babies, people with teenagers used to delight in telling me that ‘children don’t get easier, they just get different’ and I guess that’s where I am at with my ME. I guess it’s just a case of one day at a time, celebrate the good times, and pray for patience with the rest!

So it’s a year to be thankful on many levels. Many with ME have suffered for decades in a far worse state than me. Not everyone improves from the illness, and on rare occasions it is fatal.Currently, diagnosis isn’t usually confirmed until a person has been suffering for 6 months or more with persisting symptoms, so it should be no surprise that it is a long term illness. Everyone suffers differently and everyone recovers at differently but at least there is hope of recovery to some degree. There is still no cure for ME so it remains a long waiting game to see if recovery comes in months, years or decades and so patience to continue living in limbo will be my challenge for 2015.


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