Sunday, 24 February 2013

The quest continues...

My search for an M.E-friendly hobby continues, if such a thing as M.E-friendly actually exists.

The baking gave me a huge sense of achievement but I got carried away and did too much too soon. I also seemed to throw all I had learnt about pacing out of the window and did more in a day than I should have done in a week! Still, I have picked myself up and dusted myself off. On to the next one!

A lot of chronically ill people seem to turn to arts and crafts, afterall sporting hobbies are no longer possible for so many of us because of our health. Many moons ago I made my own cards and hanging mobiles and such like. I suppose I've always been a jack of all trades, master of none.

I recently reinvested in some glass and ceramic painting materials. I thought glass painting pens would be more suitable now because of the muscle twitches, weak arms and unsteady hands. So far so good. Having to wait for the paint to dry allows me to rest. I am able to sit comfortably, or even lie down, and slowly decorate jars or glasses or mugs at my own pace. I tend to do a few minutes here and there throughout the day or over the course of a few days. I don't do it everyday either. Just when my arms are up to it. They are just simple designs, nothing fancy. It is wonderful to have something to do in the day other than just aim to have a shower, get changed, meet my baseline targets and just 'be'.

I haven't had a reaction to smell of the paint either which was a concern too. It has been nice to do something and achieve something at a time when my health seems to have plateaued and maybe even taken a step back. I have a desire to sleep in the day just so that I can escape the poorliness for a few hours. But I don't. I have worked too hard at retraining my brain into knowing that sleep is not for the daytime. To give in now would undo all of that incredibly hard work.

I have no idea how I keep going. I have no idea how I manage to keep fighting despite the apparent hopelessness of my situation at times.

I have never been good at sticking to diets or keeping New Years resolutions. But I must have some willpower because I haven't given up. Every morning I try to get up and out of bed. If I can't, then it is because I physically can't and not because I can't be bothered or I've given up. That must take some willpower mustn't it? I long for there to be a quick fix for M.E but there isn't. My grit and determination are the only solution to the problem.

The other afternoon I had a good cry because I was almightily fed up of this illness. Now though I feel brighter again. I have managed to somehow pick myself back up and 'just keep swimming'

Thank you so much for all of your messages of support recently. It means a lot to know that I am not completely alone in all of this. We will plod along together.








Wednesday, 20 February 2013

Short straw

I am developing a phobia of GPs.

My experience of the NHS since being ill has actually been incredibly positive compared to the experiences of many of my friends, but still it has been far from rosy. I have accepted, perhaps from the very beginning, that there is very little that medical professionals can/will do for an M.E patient. Alas it has still been incredibly frustrating and upsetting.

On my last visit to the doctors both me and a family member left the surgery in tears. You see we had just been told that I had seen little/no improvement because my family were supporting me. Yes really. According to this doctor my parents should cease from doing anything for me. They should stop feeding me, shopping for me, cooking for me, doing my laundry... That way, and only that way, would I have no choice but to do these things for myself and pull myself out of this state of illness.

When I told the GP that I was sometimes so poorly I had to be spoon fed she, instead of thinking 'My goodness this young lady must be incredibly ill!' she blamed me and my family for not trying hard enough to recover. Do you know of any other physical illness where that would have happened? Do you know how hard that is to hear? Do you know how it feels for it to be suggested that your ill health is self inflicted or merely a case of pulling oneself together to get better?

On this same visit I was referred back to the CFS/ME clinic because I had made no improvement whatsoever. Infact I had made the most incredible progress, but because of the shortsightedness of this GP and so many medical professionals when it comes to this condition, she could not see it.

When the CFS/ME clinic heard of this they weren't too impressed. They celebrated my huge improvement! Alas that hasn't been a bed of roses either.

While I am lucky that a GP took enough interest to refer me (or pawn me off) to a specialist clinic, I am offered no treatment other than Cognitive Behaviour Therapy (CBT), pacing and Graded Exercise Therapy (GET). We are fobbed off in my opinion. We are not fixed but taught how to live with, and manage, our condition.

Now I am not a cancer sufferer so I cannot possibly speak about life as a cancer sufferer but an acquaintance, who has unfortunately suffered from first cancer and now M.E has said that she would choose cancer over M.E any day. That says quite a lot doesn't it?

I know a man who is in remission from cancer. He recently made a comment that perhaps throws light on how helpless the M.E sufferers plight really is. He said that, while cancer nearly took his life, he firmly believes that M.E is worse. With cancer, according to this friend, it either takes your life or it doesn't. You are offered help from charities, medical professions, you are sent all over the country to get the very best treatment...

This man saw me on one of my very first doctors visits before my diagnosis. He has admitted that he was shocked to see a person so incredibly poorly, barely able to walk and unable to talk. He was better than I was apparently. And now that person (me) and too many other sufferers, are neglected by the very professionals who one expects to be able to help. We are left with no definitive treatment. We are only taught how to get on with it, and even then we are often left completely alone to teach ourselves.

Looking back to when I was diagnosed by a neurologist (who cost so much money to see for half an hour we actually rang to check they hadn't accidentally charged us twice!) he did no MRI scan or blood tests. I described my symptoms and he declared that I had the classic symptoms of Chronic Fatigue Syndrome. He suggested a low dose of amitriptyline to help with my restless legs and to help me sleep and I was instructed to "have a quiet Christmas". This was in November 2010. Some treatment huh?!

I am not an expert but I do know that we as M.E sufferers are neglected in a way that would never happen with many other illnesses. M.E can and has been fatal. So why are we still not taken seriously?

Saturday, 16 February 2013

Feeling flat

This week I have been feeling a little disheartened by life despite it actually being an okay week, or a very good week really considering I managed two outings!

When I was younger and I looked to the future I never, for even a second, imagined that my life would be like this. We are fed fairy tales and the truth is that life is so much harsher than those romantic stories.

I feel like my emotions yoyo up and down with regards to my illness. I feel a bit lost. There were tears of frustration this week because I can't be the person I so badly want to be; the person I really am inside. A close relative has been ill in hospital recently and I haven't been able to be there for my family or step-up like I so badly want to. My health won't allow me to and that is incredibly hard to stomach at such times. It is proof though that this illness is not a case of mind over matter.

I am frustrated at only being able to manage a few hours in the real world and having to suffer so much afterwards. I am then frustrated with myself for not being grateful for those hours of freedom when my friends aren't able to have them at all and, at one time, neither was I.

I know that it is okay to feel like this. It is natural, and all things considered, it is expected. But it isn't really 'me' to be feeling low and flat. I can't see the silver lining at the moment, but I hope to rediscover it very soon.

Tuesday, 12 February 2013

A day in the life

My brain is trying to convince me that we were run over by a tractor last night. It does certainly feel that way so maybe Mr Brain is onto something.

I am realising now that my baking adventures were a luxury; a one off. THIS is the norm.

I keep meaning to do 'A day in the life' post but when you're poorly with a condition like ours, the mere task of keeping a diary is exhausting and can lead to a crash.

This has taken me months to compile.

A friend asked me, back in October, what I do everyday and I struggled to answer. What do I do everyday?

People are always surprised to hear that I don't watch a lot of television. I can't usually read a book or listen to music and when I do it exacerbates my symptoms. I can use my laptop/iPad nearly everyday in intervals though and for this I am so thankful. It means I get to 'see' my friends everyday because they now live in my computer. I explained to this friend that I do a lot of 'sitting'. I do an awful lot of sitting and by this I mean just sitting and looking out of the window, or looking around the room. Exciting stuff.

When reading this please try to think how you would feel if you were spending the day with the worst hangover you've ever had, plus you've got the flu and you ran a long distance race yesterday and you're sore after that. (No, I am not exaggerating! It may not always look or seem like it but we really do feel like that and much, much worse!) We do not lead lives of luxury or leisure. Everyday is a battle. When I go about my day I am feeling poorly at every second of every minute of every hour.

WARNING: continuing to read this post may cause extreme boredom. The author accepts no responsibility for readers losing the will the live after reading what is written below.


'An average GOOD day in the life of Anna Jones'


10:00 Awake (no alarm because it can send me into 'shock')

10:30 Out of bed. Carry my 'day bag' downstairs with everything I need for the day. Make myself a drink and then sit on sofa, with legs up, and rest. Take my tablets.

10:50 iPad. Check emails, messages, social media

11:00 iPad off. Sit and rest

11:10 Make myself a cup of coffee

11.15 iPad.

11.25 iPad off. Purple time.

11.30 Have something to eat. (On 'good' days like this I can make my own toast.) TV on. Watch Friends (because it'll never get old despite re-watching every episode hundreds times)

12.00 TV off. Sit and rest (my legs are always up to help improve circulation.) Look out window.

12.15 iPad. Social media, online support groups

12.30 Mum home from work. iPad off. Chat with Mum

12.35 Sit and rest

12.45 Shower and brush my teeth

12.55 Upstairs to bedroom (I used to have all my clothes downstairs but have improved enough to be able to change in my bedroom.) Rest on bed after shower

13.00 Get changed into clothes not pyjamas. Brush hair (and blow-dry it if I'm feeling particularly energetic.)

13.05 Rest after getting changed or have purple time

13.10 Downstairs. Purple time after exertion of showering

13.20 iPad. Social media. Chat with Mum. Reply to text messages

14.00 Go for my drive. Usually up to the next village or through town

14:15 Sit and rest/purple time after drive

14:25 Make myself a drink. Have something to eat (usually not able to make something for myself.) Spend afternoon alternating between being on iPad or just sitting or watching television.

16:30 Dad home from work. iPad off. Chat. Alternate between iPad, TV and sitting

17:45 Brother home form work. TV on

18:00 Meal (usually on a tray as I struggle with sitting at a table, never made by me!)

20:00 Go upstairs equipped with 'day bag' and drinks (that someone might have to carry for me.)
Rest on my sofa or on bed. Might put some clothes away (I am now usually able to do this myself.) Might listen to music while I potter around my room if I'm well enough to

20:30 Take evening tablets. Pyjamas on. Lights on dim (sleep hygiene.) DVD with warm drink (usually from my flask so I don't spill it on the way upstairs!)

22:30 Brush teeth. Depending on how 'sleep tired' I am, either try to sleep, try to read a little bit or watch another DVD (usually something aimed at children or the simple-minded!)

If all goes to plan I will be asleep by midnight.

__________

So there you have it. Exciting stuff huh? And that was me describing a 'good' day. Things used to be, and still sometimes are, much worse.

Friday, 8 February 2013

Ramblings

This week I've had to adjust the goal posts once again. One has to be flexible when you have a condition like CFS/ME. In all honesty it's been a bit of a write off but I must count my blessings because, compared to the summer of 2011, things are really quite peachy.

I've managed one shower this week so I'd advise you to not get too close...

I could sit here and overanalyse why this week hasn't been so good but it's quite obvious really. During my week of baking I must have got overexcited and been running on adrenaline for part of it. My hair is also a little bit longer now so washing and brushing that will take some getting used to, as bizarre at that may sound. I have to now be careful not to trigger a full blown relapse. This is just a slower week, or a setback if you like.

I had a bit of a tantrum about it all this week but sometimes I believe the best thing to do is have an almighty moan and a huge cry and throw all of your toys out of the pram. Who would honestly be completely content with such a life?! I had had enough. This illness is so incredibly frustrating; more so because I am supposed to have come so far already and therefore count myself as lucky. Nobody with this illness is lucky.

I thought this might be a good time to post something I wrote back in October. It was when I decided to start this blog to get things out of my system. Feel free not to read on. My Foggy Friends will have read it already and I've probably posted things very similar anyway (Mr Brain can't remember and doesn't want to check.) It's pretty long...

"15th October 2012
Sometimes there are dark days for no particular reason other than I have had ME for over two years.

My whole life has changed in the last two years...perhaps for the better in some areas. I was a bit of a drama queen, a hypochondriac. I have however always been thoughtful and so I suppose I do not get bored by simply watching the world go by. I am out of the rat race. I can appreciate life in a way others can't. An old friend used to tell me to put things in perspective when I was in a tizz about an essay or about being 5 minutes late for an appointment. Goodness me, how things have changed...I have become more laid back in some ways, despite the anxiety that can come with chronic illness. I have learnt to love myself in a way that I had never managed before.

As ME sufferers, we are the exception to every rule. We are the underclass of society. Ours is a hopeless cause. It all seems so bleak. As human beings we feel the need to reassure people that things are okay and they will get better. The cold hard truth of ME leaves people uncomfortable and lost for words. I feel we are so hard done by.

Saying these things is not us feeling sorry for ourselves or being negative. Sadly it is the truth. For us, more than for than those without ME, things aren't set in stone and almost everything is uncertain.

I am angry for the friends I have made along my ME journey. You do not deserve this illness. Nobody does. You are amongst the most wonderful people I have ever 'met'. Infact you are my inspiration. I will, and can, keep going because you have, and you continue to do so.

I am not the type of character to feel sorry for myself. I plod along with the rehab the CFS clinic has advised. I stick at it. It is working, slowly. Even yesterday I kept going...I have worked too hard and come too far to stop now. I look on the bright side and make a joke out of my situation...being overtaken by your 90 year old neighbour is amusing and when your greatest achievement of the month is being able to boil yourself an egg why not smile about it?! Progress is painstakingly slow. So slow and sometimes there is no progress at all, perhaps the opposite. But there is sometimes progress. You either laugh or cry. I choose to laugh on the whole. But my goodness, the sudden shock of realisation that hits me every now and then is horrific. What has become of my life? It is soul destroying. Our situations are so unfair.

I was in the process of applying for a job with Barnados and the Downs Syndrome Association when I became ill. Instead now it is ME charities who I will always hold close to my heart.

Some understand ME better than others. I know it must be hideously difficult. It is the misunderstanding of our condition that hits a nerve with me. It is becoming a chip on my shoulder. I feel insulted that people say to 'think positive' etc. Do they not know me at all? Gone is the Anna that my friends knew and I know that that is hard for them. "What is new with you?" people ask. I don't know the answer. To share what little progress I make can make people think that my M.E journey is over; that I am better. Progress takes months and years and is always, for me, a case of one step forward two steps back. People are confused when one month I tell them that I have made improvement and then the next month I am confined to bed again. Everything is a catch 22.

I count myself as one of the lucky ones. I feel blessed that I can always, always, see the silver lining. I did not become ill until after I had graduated, and it was before I had started full time work. I had moved back in with my parents. I was on a sort of gap year working part time before finding a 'proper' job and moving out. I suppose I am still on that gap year...

I am not the person I was two years ago. Nobody is regardless of health, I understand that. But I feel so far removed from that 'Anna'. I do not even look the same anymore. I have no recollection of what it is like to not be ill everyday.

I am content. I believe, or feel the need to believe, that everything happens for a reason. We are all in this together."

Tuesday, 5 February 2013

Watch your back Mary Berry!

I am on a quest to find an M.E-friendly hobby (if such a thing exists!)

Now I have never been a culinary whizz. Far from it. When I worked as a nanny I was known to manage nothing more than burnt beans on undercooked toast. I had never chopped an onion until the age of 21 and once used a garlic press to 'grate' cheese because I had no idea what it was really for. Nevertheless, I thought I'd have a go at baking.

I am in the process of trying to find out what foods disagree with me and my M.E. I've just finished a sugar detox where I completely cut out all sugar, even natural sugars. This was not easy!

So I've bought myself some ingredients to give me something to do and to also give me something to eat that won't upset my stomach.

To be able to bake I had to adjust my baseline targets. I had to miss out having a shower and getting changed. I also skipped my drive.

Baking. Sounds simple enough. Wrong!

First, you have to get your ingredients out of the fridge or cupboards. This involves walking to and fro, bending down, pulling open the fridge door, carrying ingredients that is actually quite heavy for weaklings like me...

Next I have to bend down to get a mixing bowl and the weighing scales. This makes the muscles in my legs burn and I usually haven't got enough strength in my legs to get back up without getting on my hands and knees and pulling myself up by grabbing onto a chair.

Then I sit in a chair and put my legs up on another chair because my body struggles to pump blood back up my legs which can make me feel faint...

Now I have to concentrate on the recipe. I have to read the instructions carefully, all the while contending with my blurred vision. I have make sure I put the correct quantities in and double check everything because I can no longer trust my brain to follow instructions first time round.

I have to use my arms to mix the mixture, or cope with the noise of the food processor. I have to get up and down from my chair to get ingredients from the fridge that I've forgotten, or to put things in the bin.

When I've actually mixed the ingredients it needs to go in the oven. I must remember that ovens are hot and so I need oven gloves on. I have to bend down and balance so as to get the trays into the oven without falling over or dropping them.

Then I wait. But I can't relax because (as I have learnt) it isn't wise to forget about things being in the oven!

I know this must sound ridiculous. It sounds a bit silly to me too because baking used to be just one, simple task. Now though it is many tasks under the umbrella of baking. It's all exhausting. You might be wondering whether it's all worth the effort, especially when my creations taste much like cardboard! You might be right. Maybe it isn't worth it. The payback that comes hand in hand with any activity can certainly make me wonder whether I should bother in the first place. Alas, I cannot live my life like that. I can't, and won't, avoid things just because they are no longer simple or straightforward or because I will suffer from the exertion afterwards. To do that would be to give up.

Last week was a baking week. I didn't overdo it but I am paying the price for it anyway. Such is life with M.E! It is frustrating and soul-destroying and demoralising, but it is what it is. It's no shock that I will suffer after activity. That's how it works with M.E. In the same way that a 'normal' person might feel exhausted and sore after running a marathon, we feel that after most things. Daily life is our marathon.

Monday, 4 February 2013

Immunity

Hyper-immune = over active immune system
Hypo-immune = under active immune system


Before I was ill with M.E, it was a running joke in our family that I was alway poorly with a cold or sore throat or something! I apparently had a runny nose for most of my life. Lovely.

Now that is not the case. I have gone from being hypo-immune, to being hyper-immune. In the time I have been ill with M.E I have had one stomach bug and maybe two colds. This is because my immune system is now always on the very highest alert.

For many of my poorly friends it is the opposite. They catch any bug or virus going because their immune system has dropped it's defences almost completely.

When you are so unwell with a condition like M.E the last thing you need is a cough or cold or any kind of bug that will inevitably wipe you out even more. For me, the fact that my immune system is always on alert and on the defensive is exhausting in itself.

When I did get a cold I was left even more wiped out than usual because my body was using its energy to fight off the infection. I ended up back in bed for at least some of the time I had the cold.

Stomach bugs and vomiting are even worse. Think of all the muscles you use involuntarily when you throw up...for an M.E sufferer those muscles are already incredibly weak, and so to be using them when you vomit (sorry this is gross isn't it?) leaves you battered and bruised for a very long time afterwards. For me, it was weeks. For others it may be more or less. I have never felt as poorly as I did when I had that stomach bug. I have never been as weak as that either. It was absolute hell.

But the fact that I caught that stomach bug is actually a 'good' sign. My immune system is beginning to correct itself and is lowering its level of alert. It is proof that my efforts to retrain my brain are slowly, but surely, working. According to the CFS/ME clinic it is my attempts at avoiding panic and always trying to remain calm during moments of involuntary shock, for example when something makes me jump, that are helping to rectify the hyper immunity.