I don’t really like bedtime now. I am rarely, if ever, ‘sleep tired’ and so I have to consciously coax my brain into falling asleep. It is 8:30pm and I have come upstairs in accordance with my sleep hygiene routine. It is so my body and brain have time to relax and wind down before we tackle the task of sleeping. It is so that I can have a calm hour or two. It is not that it isn’t calm downstairs. Everyone is quietly watching the tele, but even that is apparently too much to cope with if I want to be able to get to sleep. My cousin and grandparents and aunties are downstairs aswell this evening. I feel boring and antisocial for having to come away to bed before everyone else. I wanted nothing more than to be able to share a room with my sister and cousin but my body and brain weren’t having it. I have to stay in a room on my own. I feel like I am missing out on nothing in particular other than time with some of my favourite people. It is times like this that remind me I’m not normal anymore and I’m not well enough to even pretend that I’m normal.

I tend not to have music on during these hours upstairs on my own. Singing along, even in my head, is tiring but can also wake me up at a time when I want the opposite to happen. Lyric-less music is okay if it’s mellow. Usually I watch a DVD. Nothing that will set the dreaded adrenaline pumping through my body though. It’s best to watch something I’ve already seen before. Something with a very basic plot to follow so my mind won’t be pushed too hard trying to concentrate. Finding Nemo is a good one. Monsters Inc and Despicable Me are other favourites of mine! Simple minds…

I don’t have the ‘big light’ on during this time in the evening. Just my lamps and maybe a few candles. How romantic! I make sure I’m warm enough too. If I get cold it takes a very long time for my body to warm up and getting to sleep when I’m even a little bit chilly is impossible. I have a small sofa in my room so I might sometimes lie or that, or I’ll be in bed. It depends on how well my body is behaving. On the days when I am well enough to read I might read a chapter or two in bed instead of watching a DVD. No gripping novels but something easy and with a happy ending! I spend almost every evening in this way. I have to be alone because it is too much to even sit with another human being for some reason. Being alone makes it possible to fully relax. Going through these motions. It is a much nicer way to spend my time than some other M.E. sufferers. It is a much nicer way to spend my evenings than how I had to spend them only 6 months ago.

My evenings used to be about meeting up with friends, going to the cinema, for meals out, preparing for a night out dancing the night away. I am lucky that I have those memories, but I am sad that that life is in the past. In order to recover, in order to not deteriorate, in order to simply survive, I have to be regimented with myself and stick to having good sleep hygiene. No ticking clock in my room, no TV after a certain time, no laptop after a certain time…I can’t manage sleepovers anymore either so a chilled, girlie night in isn’t an option. Oh how my life has changed. But I have worked too hard at adapting my life to give up now.

Break time

My brain and body are threatening to go on strike and so, after negotiation, we have reached a compromise. I will have some time off from posting on my blog. In return, my brain will refrain for turning to complete mush and my body will do it’s best to function as I want it to.

I will be back next month to continue spreading the word about life in the slow lane. I can tell you’re excited already and wait with bated breath for my next post.

I don’t do mornings

Unrefreshing sleep. Bleurgh.

I do not remember being run over by a tractor in my sleep and yet my body feels as if it has. I am a dead weight. I am not strong enough to move my own limbs. They seem to be full of concrete. My neck struggles to support my head. This sounds disgusting I know but my blood doesn’t feel as if it is being circulated properly. I feel that I have poison in my veins and it is a horrible feeling. My heart is being silly. Palpitations and a seemingly irregular heartbeat are far from my favourite symptoms. Don’t worry though. My doctors tell me that I’m fine…

It’s as if, every night while I sleep, my brain forgets everything I’ve tried to reteach it over the last couple of years. There seems to be a magnetic force so strong that it can take me over an hour to be able to move from the position I wake up in. This is not a nice feeling. It can be scary but most of the time my brain isn’t functioning well enough for me to realise how poorly I must be. I am too weak and groggy to do anything other than let my body win. I am now able to stay calm when this happens. Panicking only makes it worse and my body punishes me for it. By staying calm throughout this my body seems to be able to pull itself together a bit quicker and I can then sit up. I have to then sit for a while. Slowly slowly catchy monkey. For me. it doesn’t do to try to hurry the process along. Trust me I’ve tried for months on end.

I do not enjoy staying in bed like I did before I was ill. It was always a treat to have a lie in then. Now it feels very much like a punishment for a crime I did not commit.

Following the advice of the CFS clinic I tried for months to get up to an alarm at the same time everyday. It was all a part of the process to bring back routine and control to my life. To cut a long story short I relapsed (due to a combination of efforts and factors) and ended up unable to use the stairs again, back using our dining room as a bedroom, too fatigued to chew…

What works for one of us, may not work for another. We have to find our own way, listening to our bodies as we go.

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.

Forget the degree…

…these are my greatest achievements ever.

Goal setting gives me something to do and something to aim for. Most importantly it gives me a sense of achievement at a time when it would be so easy to become despondent. They are not the goals of a ‘normal’ person or the goals the ‘Old Anna’ would have set for herself. They are the things that were taken for granted before. They are the things that one should be able to take for granted.

Today I can tick off my first goal. It is as ‘straightforward’ as getting out of bed. There are some days when I am too poorly, weak and fatigued to accomplish this. My next target is to have a shower. There is no set time at which I have to achieve my goals. My brain doesn’t respond well to deadlines. Today, for example, I may not manage a shower until this evening, if I manage one at all. It is looking like a pj day. The nausea and dizziness that had taken a back seat for a week or two has returned and the ever-present fatigue is winning the battle today. It is rarely, if ever, a case of mind over matter with this condition. Don’t you think we’d be better by now if it were?! I won’t give up though. I won’t become despondent and question what the point of getting up is when I am too poorly to do much else afterwards. I am not depressed. I have worked too hard at retraining my brain to give up now.

Pj days were always a lovely treat at university when we could slob around and stay in bed all day if we wanted to. that ‘s not how they are now. Now though, my bed is both my haven and my prison. It is the place I have to return to when the symptoms will not allow me to be anywhere else. Like I said though, I am out of bed today and have made it downstairs, another target can be ticked off. If I have to return to bed, I have to return to bed. It doesn’t matter. Tomorrow is another day.

My target sheets have allowed me to see the progress that I have made since I first became ill. I started doing them in January 2011 before I had even been seen by the CFS clinic. My daily targets now include the stretches I mentioned in my post about exercise. Making my own cup of coffee is also on there, as is getting some fresh air every day, even if I only stand at the back door or open my window for a little bit to blow the cobwebs away. I do not manage to tick every box every day, but just the fact that my list of goals is longer than it was over 18 months ago shows progress and improvement physically. The target sheets also show how my hands have regained some of their strength. My handwriting has returned to that of the ‘Old Anna’ for the most part. For so long it had become a tiny, faint scrawl across the page.