The big, wide, world!

When you have a condition like ours nothing is straightforward and we are mostly left in the dark to work things out for ourselves. What works for one of us may not work for another, and may even leave some of us feeling worse. Remember that this illness is physical. It is not psychological but neurological. These issues cannot be overcome by mere positive thought and by ‘pulling ourselves together’. Our condition has been likened to the latter stages of life with AIDs and renal failure and to MS…

The advice given by the CFS clinic was to ‘Plan, Pace and Prioritise’. Okay. I have a calendar and have highlighted the days when I have outings planned. Having this visual aid helps me. It makes it easier to space things out as my memory and concentration aren’t wonderful. It wouldn’t do for me to overdo things and have more than one activity in the same week. Sometimes this is unavoidable. It is hard when friends have get-togethers planned that might be in the same week or only a couple of weeks apart. I am unlikely to be able to manage both. I wish I could.

This illness has not only affected my life but everybody’s in it. I am unable to drive myself to catch up with my friends and so someone has to chauffeur me around. Travel, too, can affect which activities or plans I am able to make. It is not the travel sickness that is a problem for me. I can’t quite explain it but travel is exhausting. Perhaps it is that my brain is having to process all that it sees out of the window. Perhaps it is that I cannot put my feet up and so my brain seems to struggle to pump blood around my whole body. Perhaps it is the smell of the car air fresher or the fact that the radio is on. Perhaps it is the noise of the other traffic. Like I said in a previous post, I do not sleep during the day so there isn’t the option of sleeping during the journey. (I only travel in the day.)

I am to prioritise things that I enjoy and that make me happy. At the clinic they called it ‘healthy selfishness’. According to the clinic, happiness can equal energy. I do agree I think.

Planning days out or meetings with friends can be problematic when you suffer from a chronic illness. You have been careful to space out your plans over weeks and months rather than hours and days. You have arranged a lift to wherever you are going. You have a bag packed with your medication, a drink, a snack , maybe a blanket, everything you could possibly need. It has become like having a baby, when you need to carry around everything but the kitchen sink! I can’t afford to go out without this bag of now-essential bits. You have got everything ready for your return; the duvet on your bed is folded back so when you return you can climb into bed without the effort of having to pull the covers back, your pjs and ready for you to step into or you have dressed in clothes comfy enough to sleep in incase you have no energy left to get changed at the end of your day out, your shoes have no laces and so you’ll be able to slip them off more easily, you have a drink and your evening medication next to your bed, your curtains closed, and then…

…you are too poorly to go out afterall.

Anxiety or perhaps anticipation plays a part also. It is highly likely that my sleep will be more disturbed than usual the night before I have an outing planned. ‘Will I be well enough to go?’ is just one of a million questions that I might consider. Like many girls, I think about what I might wear, but I have to plan my outfits carefully because of my illness. I need to be comfortable and maybe even need to wear things that my mum or sister can easily help me out of if I have no energy left to undress when I get home. I also don’t want to get too hot or too cold. If I get cold it can be tricky to warm myself back up again. Getting too hot can trigger a ‘crash’. A ‘crash’ is when my symptoms become overwhelming and I become ‘stuck’ (paralysed) and unable to speak. They’re great fun! Nothing to worry about. It’s all ‘normal’. A drink of water can help.

I have taken to wearing a medical ID bracelet when I am out of the house. It has my name, condition and home phone number on it. It gives me peace of mind and will hopefully help to explain to people why I may have suddenly gone ghostly white, lost the ability to speak or move, etc, etc.

There is also the bittersweet feeling that comes after socialising to contend with. I come home wondering whether my sentences made sense. Did people think I was boring because I don’t always have the energy to be chatty? Did that elderly couple think I was rude for not giving up my seat for them…My silly mind works overtime. If I have met someone for the first time, I can’t help but wish they’d met the ‘Old Anna’ instead of this one.

It can also be hard to see what life in the ‘real world’ is like. It is hard to see what I’m missing out on; the normality of everyday life. People’s lives have continued while mine seems to have come to a stop. I describe it as ‘a comma not a full stop’ but still it has halted. I have no real news to tell. My illness consumes every area of my life. I have decided to embrace this ‘simple’ state though. Exciting news for me is that I managed to make myself some toast. Or even better, boil myself an egg! These are wild times indeed!

As you can see it would perhaps be easier to hide myself away! But I will not! If I am physically well enough to stick to my plans then I will. If I have no plans for a while I might go mad and do something spontaneous like travel to the supermarket with my mum and sit on the bench by the entrance with all the elderly people while she does the shopping. Walking round the shop would usually be too much…

How much activity is too much activity? We are advised to do 50% of what we feel able to do. Good advise actually. But what is 50%? Ultimately, like everything else with M.E, I think it comes down to balance. It is trial and error. There are no set rules or proven tactics that work for all of us. Finding the balance is incredibly hard. More often than not you only become aware of having tipped the scales unfavourably when it is too late. I am still trying to find my way in the M.E. world.