Choices

Look, this M.E./CFS thing doesn't come with choices so that you know. I don't just think to myself that I feel a little sleepy so I'll snuggle in for a nice nap, that doesn't happen.

I get to a point, way beyond tiredness during every day when I stop functioning on any sort of normal level. I struggle to make a cup of tea, I can't remember what I am doing, two cups of tea and you'd think it was a Krypton Factor test!

I'll start heading to the toilet and forget where I was going and go somewhere else. I'll walk several times toward the kitchen to do a meal and never get there. Quite likely I'll go there to take my meds and totally forget my meds when I get there ... at least I can tell now when I have forgotten them!

When I go for a nap it is because I just as well be comfortable, not sleeping isn't an option. It's not like I wake up feeling refreshed, I don't but I am able to function a little more than before for a while until it hits me again.

How soon in the day does this process start? Sometimes, rarely, I get up to an hour to do stuff and likely complete tasks. Most days I get around 30 minutes, some days I don't get any time at all. I choose between a nice long shower and hair wash or chores around the house because I won't have the energy for both.

I tried working, had a job just 20 hours a week, an easy job for me, a breeze but ... I kept sleeping or, if I didn't, I stopped functioning, I couldn't remember what I was doing, it was pure and simple, unworkable and unfair on my colleagues. It made me feel totally useless to give that up but I am a logical person, if I didn't then that job was the only thing I did each day and I couldn't do it well, hell, I couldn't even do it at all truth be known. If I stayed there then my lovely husband would not only work full time but would also be running the house and taking care of me.

Some days I push myself through it, it's not a freebie to do that, the following day I am out of the game, it's a one shot wonder. People may see me doing stuff and think to themselves that I am obviously so much more capable than I let on ... they don't see me later that day or the next.

So, it's basically just physically that I can't cope? Sadly not. spending some time thinking or being sociable can have the same effect as doing some housework.

It's like when our phone is on 20%, we know we can probably make it last the rest of the day as long as we limit how we use it but if we do push it until the battery is dead then it's dead. It's not able to be persuaded to do just a little more, just one more call. The battery is dead and that's that. Then imagine that the phone is actually a few years old so the battery is actually quite crap anyway .. even fully charged it's like it is just on 60% and this is at it's best. If we pace the use it'll be fine but, watch some videos and it is going to lose power very quickly. The battery is so awful that every day is like this. It doesn't get better, every day we have to ration how we use it or eventually even the basic functions will be beyond it. The advantage with a phone is that we can buy a new one, that isn't possible when it is our own health.

Each day I make choices, do this or do that. Some days I get it totally wrong and run out of functioning ability before I run out of things to do. Yesterday I got to the beyond not functioning stage around 3:45pm. I decided to go to bed but set my alarm for 5:30 to ensure I got up to prepare a meal for my husband when he returned. I never got up at 5:30 and he was upset and cooked his own meal ... I'd set the alarm but for 5:30am! Did I mention not functioning?

Every time I let someone down I feel bad, I feel guilty and the knife making it worse is that those feelings then use energy and mean I can do even less!

I want to do that garden but it is totally beyond me, it would be dangerous. I have ended up in hospital before now nearly slicing my finger off because I wasn't functioning enough. I look at the garden and it reminds me of how useless I am now.

Medical experts sometimes say the symptoms are a result of underlying depression, they've got it the wrong way around. Any depression comes from the inability to function, feeling far less than we used to be. I know I get fed up of that knowing look from people thinking that if I were to just get my depression sorted then I'd be cured!

I want my life back, it's there in my memories, in my mind I wake up every day thinking I can do all those things but am quickly reminded I cannot. My days are way busier than I can actually manage and I feel awful just about all the time.

Are depression and anxiety the same thing because my doctor seems to think they are interchangable? Far from it, anxiety is arriving at the store and seeing it busy and having to decide whether I have enough left to deal with the thought processes involved with navigating other customers or if the scanning device isn't working, can I find enough energy to join a queue and move my shopping around (no is generally the answer to that). I get anxious about such things. My heart races using up energy all the faster.

Depression is how I feel later with one more failed objective.

When I was a carer and a full time dad I didn't have this, I'd manage on a few hours sleep and just deal with anything and everything, help others and be at the top of my game. Very active all of the time, always planning ahead and doing things. Going to the gym, swimming a mile a few times a week it was tough but I enjoyed it and felt my life was worthwhile and now I have to live with people telling me I am lazy and a scrounger, that I am the lowest of the low. People ask why they should have to fund my lifestyle choices?

I am done with justifying myself. I know I was an amazing person, I know I was good for other people and especially my family. I know that how I am now is not a choice. It's a life of choices but not a choice of lifestyle!

It is so frustrating that people make judgements so quickly based on only what they know without thinking that there may be some things in life they are not experts on.

I know I have done good in my life. I know my life has been one a great many could not have coped with but I did and I am proud of that. I know that even now I do what I can for myself but mainly others, still putting them first despite myself. I don't feel the need to justify myself any longer and I apologise if that offends the so called 'experts' but I know my life choices, based on my life realities have been the right ones. If this has meant some people in society have had to pick up the tab then I am thankful that I live in a country where we will do that.

Getting ill like this can happen to anyone. Getting worse than currently can too. It feels so illogical that others make judgements like they are experts on their own future whereas none of us can be! None of us know when our own personal shit is going to hit the fan and we need the support of others. When it happens, we should never be made to feel guilty.

I never want anyone to say "there, there" because that doesn't help, just don't put me down and expect that justification.

Choices, be very thankful everyone for the freedom to make them but never take for granted that your bag of choices will always be full.