What we actually do

This "what do you do?" topic has been quite fruitful and therefore it now appears to be taking the form of a mini series. I will get back to travel shortly but for now I may as well stay on theme. It's a question that not only can you face from people that you have never met or seen in a while, who want to gain information about you but it can also be faced from people that know that you're ill. In most cases this becomes: "What do you do all day?" Or "What do you do to keep busy?" Because of course if you do not work or 'do', then you have so much time to fill. A whole 8 hours of a typical 9-5 shift, plus getting ready and travel time.

Well it doesn't really work like that. You do have a lot of time to fill but not the ability to fill it with much in the way of productivity. And no that does not mean that we are sitting on sofas outside our houses like the residents shown on Benefits Street. A good example, and one I'm sure many sufferers of all kinds of chronic illness will be familar with is being asked "why have you not done this, when you have been here all day, while I've been at work?" The short answer is of course, "because I'm ill." A longer answer would be "because I used the time when I wasn't too fatigued or in pain to have a wash/ get dressed/ make something to eat etc". Then depending on your mood you can always add in a "if I could have done it, I would have."

The other common misconception is people saying "oh it must be great to have so much time for yourself." Well yes, we do have to think about ourselves a lot, the impact of what each choice will have on our bodies etc. But time to ourselves often means time by ourselves and that can make you very lonely. Being stuck in the same room most of the time, maybe only seeing family when they are home from work or only having the social interaction of a carer. Many M.E sufferers have to limit social interactions not just because they cannot get out as much but also because even just being in company at home sometimes can be overwhelming, causing fatigue and post exertion malaise.

Furthermore some sufferers are affected by light and sound oversensitivities, which can mean meticulous planning of places to socialise. A pub or cafe that does not play music so you can focus easier on conversations. I was just thinking, what is with doctors surgeries that have the radio on? People go there to cure headaches not get one. I was speaking to someone on Twitter recently who took his daughters to watch a pantomime and had to wear ear plugs to help him cope with the noise. You may also see ME sufferers wearing sunglasses on overcast days, just to help abate the sensitivity or help prevent migraines.

However many sufferers sensitivity to light and sound is so extreme at times that it can make them even more isolated. Of course, even at home you are not free from noise. Noisy neighbours can be the bane of many sufferers lives. At least the people in your own home you can control what noise they make and when to some extent, but with neighbours you never know when they will get the hoover out or start putting up yet another picture on the wall. I swear I'm sure my neighbours have no wall space left in their home. I also dread recycling day Mondays, as the rubbish vans come round in the mornings and then the recycling van in the afternoon. The sound of smashing glass and rattling tin is overwhelming. Lately I have been getting more irritated by the sound of domestic appliances and no not just hoovers and hair dryers but the fridge or the boiler. At night in particular. At certain times I get the sensation that there is a helicopter overhead, and my brain feels like it's rattling. It's horrid. Or I think I hear music, when it's just the whistling sound of electricity, especially if my phone is on charge. I may need to look into getting some ear defenders. As for light sensitivity many severe sufferers lock themselves away in darkened rooms. Sometimes for weeks at a time. This is another reason why so many M.E sufferers hate going into hospitals because they are always so bright and noisy. So I guess you could call that isolation 'me time' but M.E as in myalgic encephalomylitis time would be a more appropriate term.

A lot of people when they are ill and stuck in bed will also be stuck to their phones, using social media mostly, or playing games, checking in at work etc. However again if you have M.E and are intolerant to light it means your phone or laptop is out of bounds too. We take for granted just how bright a screen can be. Does it still sound like the me time you'd like to have?

Then there is the old favourite belief that we are enjoying lie ins and watching Jeremy Kyle and trashy daytime tv. Well, I draw the line at Jeremy Kyle. As for the lie in, yes it could appear that way. What needs to be remembered though is that M.E is a fatigue based illness that makes you feel exhausted all the time, within that though sufferers sleeping habits vary considerabley. Not just from patient to patient but also with each individual. Our sleep patterns can be erratic, often with spells of insomnia and long mega sleeps and everything in between. However the sleep that we do get is never refreshing or restorative, contributing to fatigue and pain levels. Unless you're working hard on a sleep regime, trying your best to only sleep at night, then what can be considered a lie in is actually just an erratic sleeping pattern. If you have been awake all night or had a fitful night in pain or your body temperature is on the blink or again with the noise oversensitivity, then you are just grateful to grab some sleep when you can.

Personally I am a major sleeper. My body seems to not tolerate anything less than 12 hours. So that is where much of my time goes. And the times of day I'm asleep can vary a lot too. If I'm not asleep then I'm resting.

Many sufferers have a daily routine that they try to follow, with lots of scheduled rests to help maintain energy levels throughout the day. Read Jess B's routine here for a good version that she worked on with her physicians at M.E clinic. Personally I do not follow a routine as such, as is clear from my sleep pattern. I often think that I should start trying but at the moment my symptoms are so erratic that I simply try to go with the flow. See my post to see how I plan. It is something I will consider once I start to regain some strength and can manage my symptoms better. Hopefully now I have found a combination of tablets that helps control the pain but doesn't make me overly drowsy as well. However for now I am content to live in the moment and am finally getting accustomed to it.

So when I am awake, my basic target at the moment is to get downstairs at least once a day (usually in the evenings when Mum and Dad have finished work) and to eat my dinner at the table. I've managed this most days. The rest of the time I read, blog, watch tv, spend time on Twitter chatting and joking with other spoonies. If I'm well enough I might do some sorting. The bookshelves have recently been attacked. I managed a shelf a day if I was up to it and had no other planned activities like doctors appointments. During weekdays if I'm well enough then I'll go downstairs and see the kids; seeing them excited to see me is always a boost. Sometimes I'll read to them or draw but mostly I like watching them play or listening to them and seeing how much they've learnt. They're a great bunch, that make me laugh a lot.

I realise that I am in a fortunate position to spend the spoons that I do have on more personal activities and do not have to worry about cooking or cleaning etc. Because that is where many sufferers need to use up theirs by needing to care for themselves and then spend the rest of their time resting.

I try to get out when I can. Sometimes this just means to an appointment. Usually I try and keep the day before and the day of the appointment as quiet as possible, to be able to get out. Ideally, I would get out once a week but of course that's not always possible. It's been  2 weeks since I last went out now. It is good to get out, even just for the briefest of moments to get some fresh air. I should do this a bit more often, even just stand by the back door for a minute to get some natural light and air; the lack of which can make for even more of an unhealthy lifestyle and increase in low mood. Boredom, monotony and cabin fever can make things worse and make you resent the illness all the more. So if I can get out and the weather is not too bad ( rain and wheelchairs isn't pleasant, especially if it's raining while getting the chair out of the car and having to sit in a soggy seat) then I try my best to get out. Usually just to the shops or out for something to eat. These outings are usually quite spontaneous. A quick assessment of if I'm feeling well enough and do I want to go out? Yes, okay, let's go. Sometimes you debate whether you should really be resting especially if you have recently had a busy day or particularly bad day but again it's important to see what will benefit you in that moment.

Whereas bigger events require military precision in their planning and scheduled rest days beforehand. But the best laid plans and all that. Sometimes you just can't manage to go. So this is another reason that I try to get out when I can. To make the most of the 'better' times.

So there lies the excitement that is everyday life with a chronic illness. Hopefully soon I can start increasing my activity a bit more. I'd like to get back to doing some baking and writing some more. I have lots of ideas in my head. I'd love to try some more creative things such as customising clothes ( that's Pinterest's fault) and I've recently purchased some jewellery making things to have a go at and to get my pliars out again!

On my last post I had a great comment regarding what we do and that was:

"What we are 'doing' is working towards recovery from M.E. This involves a lot of determined lying down, vigorous resting, dedicated energy conservation, assertive apparent laziness, courageous no-saying and learning to allow others the privilege of being the givers."

Thank you again Nancy for these wise and inspiring words that capture life with M.E so perfectly. We might look and feel as though we are doing nothing but that way we are giving our bodies a good chance to heal, rest and work towards recovery. I wrote a post a while ago about this.

How do you fill your days, when you're not resting?

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