Thursday, 28 March 2013

Little things make a big difference

All a bit short and sweet this week.

The fatigue is perhaps the worst symptom at the moment. I've been drinking green tea after it was suggested to me but after an acute worsening of the nausea, and nearly throwing up the other day, I've decided it's perhaps not for me. I'm doing okay. Feeling brighter again and plodding along through the wretchedness of M.E.

I have made many adaptions to my life in the last few years, all with the aim of making my life that little bit easier. There's the stool in the shower to sit on while I get sparkling clean, the drastic cropped hair, moving my bedroom down to the dining room for quite a while, buying Wesley, and then Wendoline, the wheelchairs...

To save my legs from constantly going up and down the stairs all day, which is neither sensible nor achievable for me anymore, I have introduced myself to The Day Bag.

What a wonderful introduction it has been!

Having everything I need with me means I don't have to worry about trekking back upstairs during the day. I can now manage to use the stairs, up and down, maybe twice a day. I bring everything I need downstairs with me, only going back upstairs to shower and change (on the better days) and then to go to bed at nighttime. It's a system and routine that works well for me. In the evenings I stock up with drinks in my flasks (this also saves me from spilling drink all over my bed or the floor...or myself!)

When I first moved back upstairs to my bedroom my Day Bag contained a hell of a lot more than it does today. It had my towel (to have a shower down here), my clothes (so I could change downstairs) and the toiletries and whatever else I'd needed.

Now it has notebooks, my diary, my purse (for online shopping!), my medication, my retro mobile phone, iPad, drinks bottles, my disabled badge (for those very rare impromptu trips out), snacks...everything I might possible need for an exciting day downstairs ;-) It is much easier to have all of these things in a bag rather than trying to carry them in a pile and navigate my way downstairs, especially when Mr Brain likes to think we've been playing Dizzy Dinosaurs all night! My sister treated me to a lovely bag that has been affectionately named my Day Bag. It amuses people to see me wandering around the house with it. I feel a bit like the Queen. You never see her without her bag either...

Monday, 25 March 2013

The World of One Room

Today's post is dedicated to Jessica.

It was her birthday yesterday and all she wanted was to sit in a chair. Imagine that. You're probably sitting in a chair right now but for Jessica, and sufferers like her, it is the stuff dreams are made of. I have days when I am vertically challenged but I do not suffer from M.E as acutely as Jessica and others like her do. Like I said in my first posts back in October, I am one of the lucky ones.

I have never met or spoken to Jessica directly. Like all of my M.E friends and acquaintances I met her online. But she has to be one of the most inspirational young women I have ever come across. From her World of One Room she runs her Share a Star charity and actively works to raise awareness of our horrendous condition. No doubt she is feeling more than a little worse for wear today; mentally, physically and emotional. But yesterday she achieved something extraordinary.

So today isn't a post about me and my M.E. It's about Jessica and her M.E. Please think of her and her family and her support network today. As a team they have done (and are doing) something truly wonderful.

We could all do with getting some perspective and taking the time to count our blessings sometimes. Watching Jessica's Seven Years in the Making video will no doubt help to do that.

Happy Birthday Jessica! Huge congratulations, well dones and thank yous!

Thursday, 21 March 2013

Where's the silver lining?

A recent conversation with a friend has led me to realise that, by painting a brighter picture, I am not doing myself any favours. It's just how I am; to look on the brighter side, and it has definitely helped me during my M.E journey so far. But it may be that it leads people to think that my life is okay when it isn't.

It's hard to explain because I don't often feel sad or low. I have accepted my illness and I usually really am 'fine in myself' as I often say.

But my life is not okay.

I don't think I'm very good at sharing my feelings. I hate to offload onto other people because then they have to deal with my stuff on top of their own. My family are suffering because of this illness too. It doesn't seem fair to burden them with more than they already have on their plate. So this blog is a part of my way of offloading.

Recently I've been starting to wonder what the point of it all is. What's the point of having a shower? What's the point of getting dressed when I have nowhere to go? What's the point of changing my diet? What's the point of all of it; all of this rehab?

I know that the real point is that if I don't (when I am well enough to) I am no retraining my brain properly. I would lose my routine. I suppose I've worked too hard and for too long to give up now, but sometimes I just want to stop. Sometimes I can't take it anymore.

It feels like a down few days. I miss the children I used to nanny for immensely. The children I looked after; the children I imagined would be a part of my life forever, who would walk down the aisle with me if I ever got married. They very rarely see me anymore because I'm not well enough. They're still waiting for me to take them to McDonalds... Realising that this illness has had an impact on those outside of my immediate family, and knowing there's nothing I can do to make it better, breaks my heart. I feel so guilty but I know it's not my fault.

It has obviously had an impact on my family. My youngest cousin is growing up without the real Anna. My grandparents remark that all they need to be happy now is for me to get better. It hurts too much to think about the impact on my immediate family. My parents and my brothers and sister. They go with it because they have no choice but this isn't how one imagined things would be. Like my mum said though, I am still here, "We've still got you."

As an M.E sufferer I live in fear of relapses, while at the same time I try to appreciate my recovery. At the back of my mind I am always waiting for it to come crashing down again.

But I must, must, must remember the positives. Today I washed up a bowl! I dried it too! I could never have done that before. But isn't that such a sad achievement? People do that everyday and manage it without even giving it a second thought. It doesn't seem fair. But while I wallow in self pity there are sufferers of this conditionand many others that are in a far, far worse situation. Why can't I be grateful? I hate these down days. It doesn't feel like me. I didn't even want to watch Bridget Jones last night! I just wasn't bothered. Even she couldn't lift my spirits.

I am grateful to have made progress. Trust me, I am, but I'm also wanting more from life than having to appreciate being able to stand up in the shower.

I am overwhelmed by thoughts about the future, particularly in regards to finances. Moving out and living an independent life and fending for is so out of my reach. For now and the near-future anyway.

Friends say they are confident that I will get better. They say they 'have a feeling' or that they 'just know it'. That's lovely and I suppose it shows how strong their faith in me is. Nevertheless the cold, hard truth is that I am highly likely to be an M.E sufferer for the rest of my life. Again that isn't pessimism but merely stating the truth. This condition is like a death sentence. While I have already made improvement, and I hope to make much more, I may never be free of this awful condition. I have, or I am trying, to accept that. I need everyone else to accept that too, as hard as it is.

Just feeling a little lost. And a little hard done by today. There is a difference between giving up and giving in. I've said that before. I have given in. I will (hopefully) never give up. Although today I feel very close to it...

But like a GP (so nicely) said to me once - If you can't be bothered to get better for you, you have to get better for your family, so that they can get their life back...

Sunday, 17 March 2013

Money making

I find today's photo most amusing! Look at my face in the second one! Hahaha! I couldn't even smile. The photos were taken within a few hours of each other. I'd been out to catch-up with a friend. Perhaps it highlights how quickly things can change with this condition. I obviously felt poorly when they were both taken (you might have noticed it from my eyes in the first photo) but I was certainly feeling worse in the second one! It was one of those times where you can't possibly imagine another human being ever feeling worse than you do right now. It's probably not funny at all really but it was a laugh or cry moment. I chose to laugh...well I would have if I'd had enough energy.

Anyway I've gone off topic before I've even started. This post isn't a long one because, as always, my health must come first and my body is flagging...

I have a problem with people or organisations who prey on us vulnerable and incredibly poorly folk.

I'm not going to name names or treatments but I will say this. If there was a cure for M.E there would be no M.E sufferers. What sort of person takes advantage of such poorly individuals who are beyond desperate for a cure? Perhaps I'm being too harsh. Perhaps they really do feel they can help and they want to make a positive difference...

But you should hear the hope in my grandparents' voices when they read in the paper about there being a 'cure for chronic fatigue syndrome.' All you have to do is pay some prat hundreds of pounds for them to then tell you it that, if the treatment is unsuccessful, it was your own fault for not wanting to get better. I admit there are supplements and remedies that may help ease symptoms for many of us but there is no definitive treatment. not yet anyway. And don't get me started on how exercise is still being prescribed by uneducated medical practitioners. Yes exercise is proven to help some health conditions and I'm sure the serotonin released would feel lovely jubbly, but M.E, as I've said before, is a condition that is the exception to nearly every rule.

I feel that these 'cures' and the fact that we aren't all jumping up and down to take advantage of them is partly to blame for why we get such bad press. It looks like we aren't bothering to get better and instead we're turning away offers of treatment and help.

I am willing to try anything to get better. Of course I am. One has to be open minded with such a condition. But within reason...

Saturday, 16 March 2013

Starting over...yet again

With every setback I have to wipe the slate almost completely clean again. I can't just pick up from where I left off. It no longer takes months or years to get back on track but it still requires a kind of willpower and resilience I had no idea I had.

As always, I must count my blessings. I am not having to start from the very beginning anymore. I am well over two years into my M.E journey and already I can see my improvement because I don't have to go back to the days of being bedbound in our dining room for months and weeks, or needing a wheelchair to get down the hall to the toilet. Instead I might need a few days, or half days, in bed, and then a few pyjama days, and then a few weeks slowly building up my strength again. Admittedly it takes maybe months to get back on track after each of these setbacks. I can still meet most of my baseline targets, and if I couldn't they wouldn't be appropriate goals. Setbacks like this can happen a lot. I don't see them as full blown relapses. Relapses are different in my opinion. Setbacks are another example of how progress with this condition is always a case of one step forward ten steps back.

This current setback began on Wednesday and, because of my sensibleness and foresight, I had a 'day off' on Thursday in the hope of decreasing the intensity of the awfulness ahead. (I knew I was likely to suffer a couple of days after Wednesday's post office adventure.) I dread to think what yesterday would be like if I hadn't had the 'day off' on Thursday. It's the nature of the beast though.

So, on this occasion, I stopped before my body screamed at me to stop. This still, it seems, comes with its own problems though. I have noticed this before. When I stop and slow down my body seems to revert back to it's poorliest. It makes me wonder whether I am running on adrenaline and pushing myself the rest of the time. I feel that I always listen to my body so I don't understand. I don't think I push it too hard, I don't follow the 'boom and bust cycle' and I give in and don't overdo it. My CFS/ME clinic are thrilled with me so why these slumps in poorliness whenever I ease off a little? Has my body been playing tricks on me? And, if so, what kind of treatment is this rehabilitation programme that we are supposed to follow?

Anyway, in the midst of a setback I try to have pick-me-ups to cheer me up. This can be tricky because at my very worst I'm unable to do much more than lie in bed, not too upright but not too flat incase my head or the room spins. Bridget Jones has always been my go-to girl. She (almost) singlehandedly got me through a broken heart once and if you can survive a broken heart you really can survive anything! Toy Story and Monsters Inc (and anything Disney Pixar really) are also top of my list. I know I sound like a child, or a loser as I'm often branded, but they're my favourites and my brain really does struggle with anything more intellectual than Finding Nemo. I also turn to comfort food, although I try to keep off the gluten still. In my opinion there are very few situations that can't be improved with a decent bar of chocolate.

I don't like to describe days as good or bad but as better or slower instead. (A good day for us would probably be the most unbearable day for a healthy person!) To me these are just slower days. It is sad that this feels more normal if I think about it. Since when is it normal to be worn out looking at a computer screen for more than a minute or typing a few replies to friends online? Since I have M.E apparently. It is what it is. I try not to dwell.

This condition requires a kind of willpower stronger than anyone could have imagined. To keep going, to roll with every punch, takes something almost superhuman in my opinion. The majority of health professionals are against us, the majority of the media is against us, many of our own family and friends are against us through their inability to believe and accept this horrific illness. But worst of all, our own bodies are against us. We try to nurture them as best we can and coax them along and let them win the battles so that we might win the war, yet still they knock us down when they feel the load has become too heavy. There isn't always a rational explanation behind their revolt and we, as patients, have to rise up and rise above the unfairness of our situation. It takes a special kind of human being to do that each and every time a relapse or a setback or a crash occurs. My poorly friends are inspirational.

Our fight is something that not many people can relate to. We have lost our lives yet we are still alive. But while we grieve, we must also never give up hope. It is a balancing act that comes with no manual or guidelines. Our bodies are weak beyond recognition but our spirits have not been broken despite the attempts of everyone and everything that works against us. Everyone has their own cross to bear and who am I to say that one particular person's cross is harder to bear than someone else's, but I do feel that there are few people who appreciate just how heavy the load of the M.E sufferer is.

There are things I so badly want to do as I start to come out the other side of this current setback. Having a shower is top of my list because I look (and probably smell!) most unpleasant. Alas, I have learnt that I must not try to run before I can walk and I must not walk before I can crawl... Patience, patience, patience.

Wednesday, 13 March 2013

Anna 1 Anxiety 0

As if feeling and being so hideously poorly wasn't enough!?!

Anxiety is a side effect of M.E. it isn't the cause. I was prescribed propranonol 'in the beginning' after having a panic attack trying to cross a road. The visual disturbances, that are a result of my eye muscles being exhausted beyond all reason, mean that my confidence had been knocked quite severely. I could no longer be sure that I could see oncoming traffic properly. I couldn't trust myself. I have never taken the propranonol. Rescue remedy is always on hand though. Good old Bach's remedies!

When you live in isolation like we do the outside world is such a foreign place that you begin to doubt whether you can survive in it. You panic that you will suddenly be taken ill in the middle of a supermarket and you will so unwell that you won't be able to speak and tell people that you need help. You imagine your legs suddenly giving way and leaving you in a heap on the High Street in full view of everybody passing by, and again you aren't well enough to tell people what it is that Is wrong.

My medical bracelet combats a lot of the anxiety. So too does my walking stick. I feel confident that it allows people to see I am not in good health. I don't get the mutterings or sighs of disapprovement when my walking isn't quite up to 'normal' speed and people aren't able to overtake me. I also don't have to worry that people might think I look like death warmed up for no apparent reason. Mr Walking Stick shows that I have a valid reason for my less-than-lovely appearance. Sometimes my stick is used more as a 'security blanket' than as a mobility aid. But if it means I can get out of the house then hooray! I will eventually be well enough and confident enough to go out without it as either a security blanket or mobility aid.

Today I felt physically well enough to have a taste of reality and real life. I went to the post office, BY MYSELF! I don't even go to the post office with my mum! It's too much. But I was feeling independent and more than able to do it. With this condition you're (apparently) always meant to do about 50% of what you feel able to do. I follow that rule as best I can.

The post office is 5 minute drive away. Have I been 'getting back to driving' for about a year now? On a day like today I can achieve a 10/15 minute drive. Wildness! So I cut my daily drive down and added in the 'Walk with Mr Walking Stick, stand at the counter, talk to stranger behind the counter' instead. I wore my medical ID bracelet incase I keeled over and had my phone in my pocket incase I needed Mum. I admit the anxiety nearly won and I had to drive around the block and sort my breathing out before getting out of the car.

I honestly never imagined I would ever be able to sit behind a steering wheel again, let alone drive a car. This is like a regular person running a marathon or climbing Everest or something as ambitious as that. I was well enough to do it. Okay so I didn't wash my hair or use my laptop or watch TV beforehand because I needed all the spoons I could muster to do it, but that's okay. Life with M.E has to be balance and so I swapped hair washing for saying "Hello, can I send this please?" to the lady behind the counter. I wanted to ask the woman if she had any idea of how much of a big deal it was for me to be standing infront of her, but I resisted! I decided I'd come and tell all of you about it later instead. Lucky you!

I have managed this adventure once before. In November 2012 I think. Back then I was consumed and overwhelmed by the enormity of my achievement and my ability to do a task independently. I cried my eyes out!!!! This time, I took it more in my stride. It didn't feel so foreign that I was able to do this. Actually scratch that, I might have a celebratory cry! I really have achieved something unimaginable. It seems bizarre that I can transform from the grubby looking, bedridden weakling who doesn't even have enough energy to speak, to this showered and dressed independent individual
who can drive a car for 10 minutes and shuffle into a quiet post office.

I shall now have a celebratory blast of purple time in the hope that it'll stop the rest of the day being a write off because of my outdoor adventure.

My perseverance is paying off. I am a teeny, weeny bit better. There used to be good minutes and then good hours, but now, only sometimes, I think I might be getting closer to there being good days. The prospect of good weeks seems too good to be true. M.E is nothing if not unpredictable and I mustn't count my chickens.

Tuesday, 12 March 2013

No respite

I wet myself this morning. What a lovely way to start off today's post! Sorry. It's okay to laugh. I did. It was either that or bawl my eyes out in despair at yet another example of one step forward, ten steps back.

I am 24 years old and I wet myself.

This hasn't happened for quite some time actually. I know why. I have been less regimented recently with my stretches because I've been substituting them for baking or painting or even sewing. I can tick the 'arm stretches' box by mixing the baking ingredients in a bowl. My poor little arm gets enough of a 'work out' doing that and so certainly doesn't need me to attempt 'shoulder shrug x8' throughout the course of the day. So I haven't been as regimented with my arms stretches, or my ankles stretches because I can tick that box just by using the stairs. Because of this, though, I have forgotten to remain vigilant with my other stretches. Pelvic floor exercises and core muscle strengthening to be precise. These are the muscles that have become so loose that I am unable to get to the toilet on time.

 Because of the nature of this illness all of my muscles are shot. I am exhausted right down to the tendons in my knees and the muscles in my eyes. My pelvic floor muscles have, therefore, also been effected and are no longer strong enough to do their job properly.

The CFS/ME clinic have an M.E-friendly physiotherapist who gave me 'simple' stretches to attempt everyday. The debate about this condition and exercise is ongoing. As I've mentioned before, exercise isn't as straightforward as going for walk or jog around the block for an M.E patient. Exercise is now building myself up to be strong enough to make my own cup of coffee. These stretches have done that. I am not an idiot. I know not to push my body and, in the very beginning when I did, I suffered for my exertion like you would not believe.

At first it was just not possible to even attempt these 'simple' stretches. Now though I can manage them most days but they are all still not yet second nature. On my worst days I obviously have to adapt them. When you are confined to bed with a condition like ours being able to flex and relax your fingers is something we can only dream of. On these days my ankle stretches change to trying to wriggle my toes every now and then. It is harder than it seems. Imagine that. Being so ill and weak that you can't wriggle your own fingers or toes. These are the days when I need to be spoon fed. These are the days when I am living in hell.

You see, there is no respite. You think you're doing okay because you've been well enough to get out of bed and get washed and dressed for a few days in a row. You've even managed a trip out to a coffee shop to catch up with friends. As if that wasn't good enough you've managed a couple of 10 minute drives this past week too. But I forgot the basics, or I was too worn out from doing these extras that I didn't have enough energy left to carry the basics out. My balance has also been off again recently and I am struggling to walk in a straight line. This may be because I have also been more lax with my neck stretches. There's a link apparently and I have noticed improvement in my balance since I began turning my head from side to side a few times a day.

Recovery from this condition is a full time job. It is my occupation. In the same way that teachers have to take the register every day, I have to use all the tools handed to me to attempt to make some kind of recovery and get some control back from the dreaded M.E. There is no time off though like there is in most jobs. This is constant. This is life with a chronic illness.

While on the surface I am so much better than I was in late 2010, my body is still incredibly broken. I have to treat it kindly everyday and nurture it to become strong again. Strong enough so that I don't wet myself!

Friday, 8 March 2013

Looking goooood ;-)

I have already made a post about appearances. It is my most viewed post and so I have decided to go a bit deeper on the topic.

Before I start I want you to know that this is a positive and happy post. I am not putting myself down or berating myself. I'm just, as usual, being matter-of-fact. (Fishing for compliments has always got right under my skin so I'm not doing that either!)

It is hard to feel pretty when you feel so poorly. At the same time though, I no longer feel unpretty. This is a new thing for me. Until only recently I was insecure about my appearance. I would feel sick to my stomach getting ready for a night out at university, convinced that I looked like an ogre. I am tall and so usually felt like the 'big' one next to my petite friends. I now think back to all those years and times I felt so totally inadequate and ugly. I firmly believe that regrets are a waste of time but .... What a waste! I wish I had been more comfortable and confident in myself.

The celebrity culture does us no favours in my opinion. Airbrushing has a lot to answer for!

I'm just not sure I care as much anymore. Not in a depressed way, but in an accepting and healthy way. It's not that I don't take pride in my appearance, or that I wouldn't if I could, but...I don't know, I'm just so much happier in my own skin, which seems unusual if you look at photos where I look more glamorous pre-M.E. Illness is teaching me how there are much more important things than appearance.

I will never be stick thin, nor do I want to be. I have no desire to be obese but if I fancy a piece of cake then I will jolly well eat a piece of cake! I don't get many other pleasures in life so why would I want to give up my beloved chocolate? As long as I am happy in my own skin what should it matter what society or boys (or whoever) think of my appearance? 

I look poorly. People sometimes make statements about how poorly or 'well' I look to me or my family. I'm not bothered. Some people get irritated when people tell them how well they look when they are actually feeling hideously poorly. I have decided to take such comments as compliments. Surely it's a compliment when someone tells you that you don't look half as bad as you feel you do? We were brought up to be modest and I've never been good at accepting compliments but I am getting better at it. See! Every cloud really does have a silver lining.

I am incredibly pale (another symptom of this delightful illness) and I admit I feel more confident with a mask of St Tropez on. I don't wear make up on a daily basis; partly because it requires energy I no longer have. Also, I often can't cope with the chemicals and perfumes and moisturisers. Some days I look poorlier than others and it doesn't necessarily relate to how poorly I am feeling. I often have what's been described as 'M.E eyes'.

As you probably know by now I had to have my hair cropped short in my first year of illness. It was another decision that M.E. made for me. I just wasn't well enough to manage anything longer. At the time I was unaware of just how short it was because I was so incredibly poorly. I wasn't 'with it' enough to care. Now though, as I am a little better, I know it perhaps isn't everyone's favourite hairstyle. I like it though! Practicality has to come first.

I do feel insecure about how I might look like a boy (and very much like my brother much to his disgust!) However, I choose to laugh it off and most of the time I am able to pull myself together and not let comments get to me.

Sometimes the jokes and comments do hurt my feelings. Some people make no secret of the fact that they're not too keen. I admit to currently looking like a cross between Noddy and Friar Tuck (without the bald patch, although my hair does seem to be falling out again-another lovely side-effect of chronic illness!)

To combat the unfeminine and perhaps unglamorous haircut I like to paint my nails. Most of the time I have nail varnish on. I've always been like that and was known to change the colour daily during my summer holiday work. (Of course it's another task that now requires energy and concentration that I don't have in huge supply.)

Shaving is something else that is too tricky and it's hard to feel girly and pretty when one could easily be mistaken for wearing a gorilla suit... A male friend once said the same about facial hair making him feel more unkempt than he would have liked. My legs were never, ever smooth when I shaved them anyway so why waste my energy? Hair removal is now saved for special occasions and done no more than once a month. Maybe I should plait my leg hairs to make myself feel a bit more girly? Too gross? Sorry! 

I opt for baggy clothes because they are more comfortable. Comfort has to come first when you feel as poorly as this. It does for me anyway. But again this can make me feel rather unpretty. It's out of my hands though. At the same time, if I am hot I will wear shorts or a dress regardless of how fat or pale or hairy my legs might be.

This illness dominates everything and I have to accept that.

I think this new found confidence in my appearance also comes with age. I see girls in their teens berating themselves publicly over how ugly they are. It isn't healthy. Why talk negatively about yourself like that when other people will no doubt be quite happy to do it for you behind your back?

So I have a pointy chin and my jaw looks wonky when I smile? And my stomach is no longer flat and I have knock-knees? I have wide hips and my thighs meet in the middle and my skin isn't soft anymore after years of being unable to moisturise it. Yes I have put on weight and have the stretch marks to prove it. Who cares??? I don't have enough energy to waste time worrying about how I might be looking and I certainly don't have enough energy to try to do something about it.

I'm learning the hard way that there is so much more to life than those petty little things. Of course it's lovely to feel glamorous and beautiful but it's not the end of the world.

I'm not saying I am/was amazingly attractive, but I no longer think that I am disgustingly unattractive either. It has taken these years of illness to love myself for who I am. Illness has given me no choice but to learn to accept myself for who I am.

Of course I have a crisis of confidence now and then, and that's probably evident in certain blog posts, but don't we all? The person I see in the mirror isn't usually the person I want to see. The paleness and weight gain is enough to make a person feel unglamorous and with the hair too...

Still, it is out of my hands and I am trying to make my peace with that.

Sunday, 3 March 2013


I am so grateful to have come this far. I measure my progress on the simple fact of being able to navigate the stairs up to my bedroom and no longer having to reside in our dining room.

But what is it I have to be grateful for? Grateful that I feel so poorly 24/7 but that sometimes, SOMETIMES, the awfulness eases for a couple of hours so I am able to socialise or have a shower or read a bit of my book or watch a bit of tele. Two hours of normality and I'm as drunk as a skunk. That's how I feel anyway. I, of course, have nothing alcoholic to drink. I'm lucky that I had those two hours. Many of my friends don't have that luxury.

What am I supposed to do? Listen to my body or gradually push it? I'm told to do both. Well how does that work??? I'm trying to find a hobby to give myself a sense of achievement and to give myself something to do and aim for, but is it worth the suffering afterwards; for my week to be wiped out because of baking one small loaf of bread?

Take today. We are visiting family this afternoon. Do I go along? Or, because the last couple of days haven't been the best, do I stay at home? I try to weigh up which is the lesser of two evils but isn't that an awful way to think about spending time with one's family? Do I tackle the journey or tackle being at home alone for a few hours? The answer is most certainly "Get off your laptop for a start!" Haha!

I have to count my blessings though, because what is life if you don't? I have no choice but to keep going. To stop will only prolong my recovery and that is the last thing any of us want. I live in hope but at the same time I am realistic about my life, my illness and my future.

Life with M.E is all about balance. Balance. Balance. Balance. Finding that balance is the hardest thing I have ever had to do.

Friday, 1 March 2013


This isn't a very long post because my brain is a bit cross at having been awake at 5:30am.

Yesterday I had a mild allergic reaction to something. I had itchy eyes, blotchy and sore and burning skin, a runny nose and my breathing became wheezy and unnatural. My lips felt tingles and my sinuses felt blocked.

This is another fun side-effect of M.E. I now have an increased sensitivity to...well all sorts. It can change on a daily basis and depends on the fluctuating nature of my illness. I am yet to see a real pattern to it though.

I think I've already mentioned sensitivity to light and sound but this post is about what I will call chemical sensitivity.

I can react to perfume and scented candles or the smell of alcohol and cleaning products. Air fresheners often have to be relocated or thrown away in our house because they seem to trigger a worsening of my symptoms. The nausea gets worse and my head feels incredibly tight. I become zapped of what little energy I might have had.

Yesterday's reaction may have been down to something I had eaten but I didn't get that acute stomach pain that usually comes when I have eaten something that doesn't agree with me. We can't put our finger on what it was that triggered a reaction yesterday. Possibly salt, of all things.

It can be scary and is very unpleasant to be sensitive to these everyday things. There are many people who suffer in a much more severe way than me. It can make everyday life very tricky. If you have a visitor who is wearing an unfamiliar perfume or you can smell the washing powder on their clean clothes, it can make being in the real world that little bit more tricky, when things are already not plain sailing because of the M.E. I can remember having a particularly bad reaction to the smell of fake tan that one of my sister's friends had on a couple of years ago. It triggered a migraine (something I suffered with pre-M.E) and I ended up in bed for a few days to recover. It wasn't very nice.