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.

A sight for sore eyes

Like a small child dressing themselves I now tend to wear what I want when I want. You might see a toddler in a supermarket wearing fancy dress. I haven’t quite taken it that far…yet. According to my family and friends my dress sense has always been questionable but things are more unusual than ever since I became ill. I now don’t see the point in saving things for ‘best’ or for my days out. If I want to wear a nice dress around the house, I will wear a nice dress around the house. Being so poorly and with such a complicated illness means I don’t get out much. If I saved all my nice clothes and favourite outfits for the big wide world they may never get worn. What a waste! Who cares if they don’t match! It’s not like I’m going anywhere…usually. Jewellery can be uncomfortable for me now and my arms don’t feel strong enough to fiddle around putting a necklace on, but on my better days I can be found with a ring on nearly every finger to make up for the all the days I was unable to wear them. Think Phoebe from Friends…

There were times when I had to be dressed by my mum or my sister. It makes me a bit sad to think about it. Thankfully these days I only tend to need people to help me do my laces up sometimes. Laces can be a bugger! All that bending your legs, crouching, leaning forward, putting your head down, stretching your arms, using your fingers…I’d be in a heap before I’d even stepped out of the door!

I usually resemble a mismatched mess with uncoordinated ensembles. I use what little energy I have putting the clothes on, rather than worrying if an outfit ‘goes’. But like Marilyn Monroe said, “If you can’t handle me at my worst, then you sure as hell don’t deserve me at my best.” Take me as I am, or not at all. Illness has changed me. I am too poorly to faff around with make up. On the days I might manage to put it on, the exertion will inevitably make me too poorly to take it off. Sometimes I paint my nails for that added bit of glamour. Ha! I have to be careful though as M.E. has made me intolerable to many smells and nail varnish is one of them.

Comfort, now, is paramount. I can’t quite describe it but I feel too out-of-sorts to be dressed in anything uncomfy. Leggings are a must and for the days when I don’t have enough energy to put them on, jogging bottoms it is. I always try to get changed out of my pjs in the attempt to remind my brain that daytime is not for sleeping. This is just not possibly sometimes though and few things are now more exciting than a new pair of snazzy pjs!

Layers, too, are essential. I can’t always regulate or control my own temperature because of my broken brain. Because of this I ‘layer it up’ starting with a vest (yes like we had when we were children.) Cardigans are better than jumpers. They seem to not take as much energy in putting them on and they’re easier for people to help me out of if I am hit by a sudden heat wave and need to cool down NOW.

So if you see a twenty-something woman shuffling around looking worse for wear in the most unusual of outfits, it may well be me!

Lovely, lovely people

I told you I had wonderful family and friends! My brother and his friends (well just his friends in the end as he injured his knee) ran the Robin Hood half marathon at the end of September. I was overwhelmed that they ran it for the ME Association with me and my friends in mind. It meant more than I can put into words. The money is still rolling in and we haven’t added up the offline donations yet. Thank you to everyone who sponsored them. I know everybody has their own charities and causes that they like to support so it means even more that you chose to support my cause; the ME Association. If you’re reading this boys, thank you from the bottom of my heart. ❤

Patience is a virtue

When I was seen by the CFS clinic we were given notes to read that covered everything we’d learnt in the group sessions. Everything was typed up for us so we didn’t have to take notes ourselves. This saved us a lot of energy and we were able to concentrate solely on sitting and listening. We had the notes for reference when we got home as we would have most probably forgotten what we had covered because of our memory problems. Many of us though were unable to read through the notes properly. We had used up our energy travelling to the sessions, sitting in an unfamiliar chair, listening to voices louder than we were used to, the hustle and bustle of everyday life, coping with brighter lights than we could cope with, adjusting to temperatures we were unused to…

We were too poorly. As my vision is affected by my M.E. I also have to contend with the words and pages being out of focus and looking like they are swimming…fun fun fun! But I still have those notes for reference and now, although I cannot read more than a page at a time usually, I am able to flick through them when I feel I need some guidance.

For months and months and months I had a go at sudoku to kick start my brain into working properly and to improve my concentration. It was hard. Very hard. To start with I couldn’t even look at the puzzle without my brain having a hissy fit. Then it took my hours to complete a puzzle because I needed ‘purple time’ every couple of minutes. I can now finish a puzzle in just a few minutes. I have carefully retrained my brain.

My concentration levels have improved enough that I can read books again sometimes. Yay!

I have always been a reader and so it is lovely to be able to get lost in a book from time to time. I read rubbish mostly…romantic, chick-lit stuff. I would like to be able to read a few history books again because I’m a geek like that…something to aim for.