Wednesday, 31 October 2012

Zzzzzz

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.

Wednesday, 24 October 2012

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.




Tuesday, 23 October 2012

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.

Monday, 22 October 2012

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.

Sunday, 21 October 2012

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!

Saturday, 20 October 2012

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. <3 

http://www.justgiving.com/teams/Cool-runnings

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. 


Friday, 19 October 2012

Simple pleasures

I have always been easily pleased. My favourite Christmas presents are always Christmas socks! I wouldn't say I have expensive taste or like fancy food. Diamonds just don't do it for me.

I think being this way stood me in good stead for 'The M.E. Years'. Since being ill it has become even more important to smile about the little, simpler things in life. Illness has given me the opportunity to look at things a completely different way and appreciate them much more. A different perspective. This year, for perhaps the first time ever, I was aware of the leaves turning orange and red as Summer ended and Autumn began. Before, I never really took much notice of the changing seasons. It took only two weeks for the cherry tree across the road to change colour completely.


As I see things, I am going through a life changing experience. Not many people get to have one of those...


Blossom and blue skies




Tightrope

One of the trickiest things is not overdoing it on the days when you feel a little bit more alive. I must avoid the 'boom and bust' cycle. It is so hard not to go 'all out' on the days when you seem to have a little bit more energy and do the things you have been unable to do for so long.

Today I desperately wanted to try to bake a cake. I have been craving cake all week and now that there is gluten-free flour in the house it seemed the ideal time to do it. But I knew I was 'on the edge'. I have to be careful not to overdo it, even though I felt like I could do it at the time. This week has already been 'busy' for me with spending more time on my laptop than usual because I started this blog. I had to reign myself in. When you have M.E. you have to do this a lot. You have to be regimented. I have to do this when I see my friends. I would love to stay out and see them for hours on end and I desperately want to, but I can't. I mustn't. I mustn't get ahead of myself. Doing too much is not good. Running on adrenaline is not good either. The aftermath is not pleasant! Adrenaline knocks me for six! I find it hard to know when I am running on adrenaline but today I think I spotted it and so stopped before I got ahead of myself. I have had to learn to be patient. My cake will have to wait. Perhaps somebody would like to make it for me? ;-) The flour is ready on the side in the kitchen waiting for you...


I always joked I was allergic to exercise...

Exercise. Hmmm. A tricky one. Today is perhaps not the best day to tackle it either as my brain is protesting because I have started this blog. I will come back and make sure it makes sense when I was had some 'purple time' and maybe a day off from my laptop.

The week before I first felt ill in 2010 I joined the gym. I had put on a few pounds while being at university and having nights out dancing as my only real exercise. I joked that I was allergic to exercise because I didn't fancy the hard work of getting fit again ;-) Within the month of joining the gym and starting to get fit I had lost most of my mobility. Now, with M.E, it is as if I really am allergic to it. My symptoms flare up after the effort of merely having a shower. Making my own dinner is exhausting (on the rare occasions that I have to fend for myself.) It is as if I have run a marathon whilst suffering with both the flu and the worst hangover of my life. Lovely!


Exercise for me as an M.E. sufferer is not what you would imagine. It is not going for a walk, to the gym, for a swim. It is the things that I took for granted before. The everyday things that people should be able to do without giving it a second thought. It is having a shower and washing my hair. This is using muscles that my brain and body have decided are now too weak, sore and painful to do anything at all. Exercise now is making my own cup of coffee and walking to the kitchen from the sitting room to do so. It sounds silly I know, but that is how poorly we are.


I have been advised to only take advice regarding exercise from M.E. specialists. I was given stretches to try by a physiotherapist specialising in M.E. They are as 'simple' as turning my head from side to side and flexing my ankles. It is to prevent my muscles from wasting away from lack of use. Since October 2011 I have managed to increase my stretches from repeating each stretch just once, to repeating it 6 times a day. This is the rate at which we are able to, and have to, work. For some of us even that is too much. For others, they may be able to manage more. No two of us are affected by this illness in the same way. We cannot compare ourselves against another.


M.E. is still so misunderstood. Some of us are prescribed exercise by medical professionals as a way to recover. In desperation to recover some of us have pushed our bodies and trusted that what our doctor has suggested must be accurate, but inevitably we relapsed because our bodies now work differently from 'normal' or 'healthy' people.


I think it is partly our ignoring the advice to exercise that gives us a bad name. People think we are lazy and are ignoring the doctors because we don't want to get better. People think we must have the wrong attitude. They can't understand why we aren't willing to try absolutely anything to get better. But we are poorly!!! Would you go to the gym if you had the flu or a stomach bug?! I imagine exercise is rarely prescribed as a treatment for many other illnesses...welcome to the world of an M.E. sufferer.



Thursday, 18 October 2012

Slow and steady wins the race


Progress, recovery or improvement is painstakingly slow. For some of us there may be none at all. I have to accept that it is highly unlikely that I will ever return to my pre-ME energy and activity levels. Like I said to begin with though, I am one of the lucky ones. I have already seen improvement and made progress towards recover. I have been able to use the stairs and sleep in my bedroom for almost a year now. If I could go a little jig to celebrate I would! I remain hopeful that I will continue to improve, or at least not go back to the way I was this time last year. I may be naive in looking on the bright side, but it is just the way I am and I am thankful for that. 


This little guy was clearly moving faster than I was, hence my inability to get a non-blurry photo...


Unconquerable soul

Invictus

Out of the night that covers me,
Black as the Pit from pole to pole,

I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul. 
William Ernest Henley

Confused.com

This is the first time I have ever really spoken freely about my illness outside of my immediate family. I don't know if I like to talk about it always or not. It has become so normal to me that perhaps I see no need to talk about it. It is taken as a given that I feel poorly everyday. My symptoms are ever present, lucky me! I think I needed this outlet though. I did. I needed to feel that I could communicate freely with others who are in the same boat. We are in uncharted, rocky waters, but at least we are together. Even if nobody reads it, I think I needed to do it for myself, to get things out of my system...


Everything is a contradiction. We are told to listen to our bodies but to push ourselves too. We are told not to sleep during the day but to listen to our body. Well our body is screaming at us to sleep?! 
I suppose it is all about balance. Nothing is set in stone. Nobody, NOBODY has all of the answers. We are largely in the dark. I find the contradictions very frustrating. Very frustrating indeed. I have stuck at it but I have been very careful. You must always listen to your body. It is ultimately in charge when you have M.E. You do not want to make it anymore cross and grumpy than it already is. You 'push' it gently, and by this I think I mean that you persevere. When you suffer a setback or a relapse, you change the goalposts. It is hard. The hardest thing I have done probably, but it all just seems so normal now. It is comforting to know that I am not alone. My family are amazing. My real friends have stuck with me. My new friends are in the same boat as me. Most have been suffering for a lot longer than me. They are my inspiration. 

Wednesday, 17 October 2012

Don't give up on us. Please.

I can understand that people want me to be the person that they knew and loved for 21 years. Nobody wants that more than me. But for better or worse, times change. With M.E. most things are out of our control. There is very, very little we can control. We will inevitably have to cancel plans because our brain has decided to be an awkward bugger for no apparent reason. It is no ones fault. You may not hear from us from time to time. We may not reply to a text. We are not ignoring you. We are poorly. Very poorly. We are not doing it on purpose. We are not pretending. Why on earth would we have chosen this life of invisible but constant illness? And nor are we depressed and lying around feeling sorry for ourselves, wallowing in our own pity. Depression can come as a result of our illness. M.E. has taken our lives, but it has not killed us. We are in some kind of limbo.

Who wouldn't feel down in such circumstances; When you are too weak to make it to the toilet and so you wet yourself or have to have someone spoon feed you or dress you and brush your teeth for you?! Our 100% may not be nearly as much as the average persons 100%, but we do try to give all we've got to maintain our relationships.

Accept and Adapt

It is not the life I would have chosen, but it is the life that I've got so I try to make the best of it and smile at the simpler things in life. I believe that you have to give in to M.E. in order to recover. Let it win the battles in order for you to win the war. Giving in to it is not giving up. It is merely tactical. Like other illnesses, we cannot fight it. We have to work with it much as we hate it. I have had to accept that I am not, and cannot be, the person I was before I became ill. It has not been easy but I have started to adapt my life to fit my new limits. Again, this is not giving up. To maintain my independence I have had my hair cropped short so that I am able to wash it myself. My arms are too weak to manage anything longer at the moment. I would never have been brave enough to do it before. Not many people like it, but I have more important things to worry about than what I look like or whether people approve of my hairstyle. 



On the handful of times that I am able to venture out of the house, using a wheelchair means I can save the energy I would use walking for other things such as chatting to friends or cutting up my own food in a restaurant. It was not an easy choice. I never imagined I would ever have to make such a decision and with my legs becoming weaker, and my walking slower,  it was surely the sensible and best option. Of course my brain and body will still throw a wobbler afterwards, but the aftermath may be slightly less horrific than it would have been without the wheelchair. My friends find the wheelchair highly entertaining and feel the need to use it themselves if we are out together. Apparently it comes in handy to hang their bags on! Their 'driving' skills leave much to be desired, but I am a firm believer in laughter being the best medicine!!!



Just tired? We wish!

Fatigue is not tiredness.

It is hard to imagine how weak or fatigued you are with this illness. I'm sorry if you can imagine as it means you must be a fellow sufferer. I wouldn't wish this on anyone. 


Sleep does not improve our condition. In fact the mornings can be the worst for me. We never wake up feeling refreshed or rested as human beings should. We are often hit by night after night of insomnia. Staying up all night is not nearly as fun as I remember it being at university!!! We are not lazy louts who lounge around all day watching television. We are often too poorly to watch tv. It requires energy that we do not have. It is simply too much for our brains to process. With me, my vision is still affected by my M.E. and so this makes it difficult to read a book or magazine. If my vision was to behave, my concentration levels are not always up to the challenge anyway because of the overwhelming fatigue. 


To cut a long story short, our bodies are not able to produce energy like they once did. Our batteries are flat and nobody knows how to recharge them, other than to rest but even that only charges us to a fraction of what we'd hope for. 


To be too fatigued to speak sounds ridiculous I know. However, the muscles needed to do so are sometimes too weak. The energy required to get these muscles going is no longer there.

Next time you send a text message think about what you are doing. Your fingers have to be strong enough to press the keys even on a touch screen phone. Your brain must function correctly so that you can form proper sentences and remember the conversation that you are engaged in. The effort it takes to move your arm and head and neck to pick up the phone... 

The same applies when you make a cup of tea. You must first lift the kettle. Run the tap. Fill the kettle. It is now even heavier than it was before. You reach up to open the cupboard. Get out a mug. Put it on the work surface. Get out a tea bag. Get a spoon from the drawer. Walk across the room to the fridge. Pull the fridge door open. Bend to get the milk. Close the fridge door. Walk back to the kettle. You must also remember that the kettle is hot and you should not touch it. With a condition such as mine you have forgotten these apparently unforgettable ways of life like needing to wear oven gloves when removing something from the oven...your brain ceases to function as it should. 

So no, we M.E. sufferers are not 'just tired.' 

How are you?

People ask because they care. It is lovely that they care. We are grateful and thankful. I am incredibly lucky that so many do care. It is a question, however, that has begun to fill me with dread and unease. How on earth does a person who feels so poorly everyday, answer such a question? It is easier when I am talking with my M.E. friends as they understand that 'fine' doesn't mean fine, it means 'today I no longer feel that I need to be in hospital.' I'm sure people wonder and worry about whether they should ask it or not. I know that I do with my M.E. friends. We now word it slightly differently between us: "I hope today is an 'okay' day" A good day for us is probably the worst day imaginable for a healthy person. 

As human beings we are apparently unable to stop ourselves from sugar coating things. We cannot seem to deal with the cold, harsh truth that invisible chronic illnesses such as mine present. If I was to answer the question of 'how are you' honestly it would probably make you uncomfortable. It would probably make me uncomfortable too. You may think I am feeling sorry for myself, concentrating on the negatives. You may wish you had never asked and may never want to ask again. No one likes a moaner. You would not know what to say. It's a no win situation I feel. You ask because you care and I don't answer honestly because I care too. It is a tricky one. One that I am yet to get my head around. You may be wondering what it is I want from you. In honesty I'm not sure. But I know that I want your understanding, rather than your pity. And maybe a hug.

"It'll be okay" will not suffice because the truth is it might not be. To remain at the peril of this  condition is not okay. It is no ones fault. There are simply no words for a response so brutal and harsh as our truth. Ours, sadly, is a hopeless situation. We cannot get better by mere positive thought. There are no proven treatments or drugs for us. We are mostly forgotten. Out of sight out of mind. But we exist. We are here. We are fighting our own war despite our disabilities. We have a voice. 
This is not negativity. I am a 'glass half full' person by nature. I am merely talking about life with an illness that still carries a stigma, even in 2012. 

What time is it?

Purple time! 

I call it purple time because when I was completing my activity diary for the CFS/ME clinic I had to colour my periods of proper rest in purple crayon. I was embracing my child-like state! 

Proper rest (or purple time) is a period of time, maybe only a few minutes long, when I have complete rest. No music. No tv. No listening. No talking. No reading. No nothing. Only breathing. Some people use meditation. I merely sit or lie with my eyes closed and concentrate on my breathing. It can be tricky to clear my head of thoughts and worries but I stick at it and have rest and relaxation. It is recommended for us M.E. sufferers and I can honestly feel the benefits, although short lived, afterwards. If I have an 'itchy brain' (a symptom I have where it feels as if insects are crawling between my skull and my brain) it is the only thing that can help relieve it. 

I do not sleep in the day time. Purple time is not nap time. I am retaining my brain so that it knows that daytime is for being awake and nighttime is for sleeping. It was hell for the first six months but I have replaced sleep with rest and now it is okay. I am rarely 'sleep tired' anyway...

Even my friends have jumped on the bandwagon. We were together for a friend's birthday and the girls took their role as 'carers' very seriously (at times!) They made sure I still had my purple time, whether I wanted it or not. 

I try to incorporate this 'proper rest' into my daily routine, even on the days (rare as they may be) when I am out of the house. If a friend comes to take me out and parks in a Pay and Display car park, for example, I will use the time it takes her to walk and get a ticket to have a quick blast of Purple Time. Alternatively if we are spending the day at a relative's house I will take myself off into another room for a few minutes of quiet. 


Rest is best!



Rehab

I am in the process of retraining my silly, broken brain. It is as if the power plug was pulled out before all of the important documents were saved. For example my brain seems to have forgotten that night time is for sleep, it struggles to regulate my temperature, forgets to walk in a straight line, feels dizzy if I am not lying down or have not got my legs up.

I have learnt, as have my fellow sufferers, that stress and adrenaline is not my friend. A stressful situation for me now, in my state of ill health, is having to decide what to have for dinner. It is something so simple yet so overwhelming since my brain has apparently shut down on me.


Within months of my diagnosis I received support from my local CFS/ME clinic. I attended an eight week group therapy course. Each session was two hours long. An incredibly long time for someone so poorly. It was soul destroying to see how much worse I was compared to the others. Not that it is ever a competition. I remember being too weak to take the lid off a pen to write my name.  I almost didn't go back after the first week and not just because it was too much physically. The course equipped me with the tools I would need to help regain some control in my life. It constantly reminded us that there is no cure for us, only steps to help to get some of our life back. The sessions covered:



  • Sleep hygiene
  • Activity cycle-Boom and bust
  • Goal setting
  • Stress management
  • Diet
  • Memory and concentration
  • Pacing and Graded Exercise Therapy
  • Cognitive Behavioural Therapy
  • Assertiveness
  • Purple time (I will get to that later)
  • Setback management 
I have taken from it what I felt applied to me. A lot of people have different opinions on some of these treatments but I am giving it a go. In the past two years I have already seen progress and improvement and got back a bit of the control that the M.E. had stolen.

Tuesday, 16 October 2012

And so it began

Less than two months after graduating from university I started to feel ill. I had commuted from home during my last year at university and worked part time as a nanny and helping out with the family business. I had been busy. My body decided it needed a rest. It had a massive strop! It is still protesting after years of constantly being on the go. 

In early September 2010 my vision went funny. I have worn glasses since I was 7 years old but this was different. Everything was blurry, out of focus and swimming like you used to get on old television screens. The opticians found nothing wrong. I felt pressure behind my right eye. I had hideous headaches, different from the migraines I was used to. Neuralgia. By the end of the month I was hit by such awful fatigue that I would sleep whenever I wasn't at work. I was still working as a nanny and job hunting for a full time, 'proper' job. By October I was unable to drive. I had to stop working and cancel upcoming interviews. My arms and legs could not manage it, nor could my brain. It was as if it full of cotton wool. My concentration levels and memory had become awful. I was a zombie. I could barely walk. I could no longer manage the stairs. I slept in the dining room. My body was full of concrete. My arms and particularly my legs felt incredibly heavy. My speech was slurred. I was dizzy and faint and felt drunk. I was in pain and my muscles and joints ached in a way I had not experienced despite my years of sport. I will spare you the rest...

I made a nuisance of myself at the doctors throughout September and October. Something was obviously terribly wrong. Queasy at the best of times, I was so desperate I braved my first ever blood test. All results came back clear. I can remember 'brain tumour' being mentioned. I was referred to a neurologist. My appointment was only two months away in mid-December but we could not even wait that long. My grandparents wanted me to have answers NOW and paid for me to go private. It was  disgusting experience with NHS patients sitting behind a screen on plastic chairs, while we had leather sofas and a coffee machine. 30 minutes cost an extortionate amount of money. I was incredibly grateful to have the help and support of my family though. On the 18th November 2010 I was diagnosed with Chronic Fatigue Syndrome.

I have been ill every day since. I cannot remember what it is like not to feel so very poorly. But I am one of the lucky ones.

Welcome to my world!

So I have no real idea how this works or what I am doing so be nice! Shall I start with an introduction? A bit about me? Well...

I am 23 years old but 24 in November, and, in true Anna Jones style, I am already excited! I have a degree in History. Modern History was my fave. I am tall (for a girl) and have finally accepted that my hair is brown; a lovely, exciting mousey colour, rather than the blonde I had convinced myself it was. Goodness me it is tricky to try and give a clear vision of oneself this way. What else can I say? I like sport! At school, many years ago, I was a bit of an all-rounder I suppose. I was in most of the sports teams, took part in the school plays, sang in the choir on several occasions (my apologies to all those who had to hear me 'sing') and I did very well in my exams. Yes. Yes, I suppose I was geek. I didn't go all-out on the geek front and become a complete loner though. I had lovely friends, and still have many of them today. At university I made some just-as-lovely friends too. I have friends for life! I also have a wonderful family. They're a lovely bunch! I learnt to drive at 17 and have always been able to get a tan! I have also always worked. Mostly with children but in restaurants too and I spent several years getting to see behind the scenes at Argos. What a treat! I like the normal things: music, books, food (nothing spicy though) and non-scary films (even Harry Potter was too much for me)...


In the last couple of years my life has completely changed. This is why I have started my blog...