Surprise!

Apologies if this is incoherent. My brain has tried its best.

There is an ever increasing list of symptoms and ‘happenings’ that come with having this condition. I admit I had no idea what was in store for me. After all people with M.E. were just more tired than the rest of us weren’t they?

My M.E. is still symptomatic apparently. I still suffer with the same symptoms I had at the beginning in 2010. The list is ridiculous. My original symptom list, that my neurologist asked to see, covered at least 3 sides of A4 paper. Some are byproducts of being ill for so long and not necessarily a symptom of M.E, but all of them are far from lovely. It was a huge shock when I started losing my hair last year. Not in fistfuls but in small clumps. I was told it was just my body’s reaction to being so out of sorts for so long. Luckily that has stopped now and I never had any obvious bald spots.

Problems with circulation can be common for loads of people but it wasn’t something I’d experienced before. Now I often have two purple (cold) toes and three red ones (boiling hot) on the same foot. My hands and feet often ‘go’ and I am left with swollen, bright red hands that feel extremely tight, and burning cold feet. This happens most days, usually in the evenings. Feeling as if my blood is running cold or that my veins are full of poison are regular occurrences too.

As a healthy person, my energy levels could be improved by having a bar of chocolate, for example. As a sufferer of M.E. this is no longer the case. My energy levels are not noticeably improved by eating and I steer clear of sugar boots or energy drinks as they make me feel very peculiar. It seems to trigger a release of adrenaline which is my worst nightmare. I am left feeling wired and more zapped of energy than before. Adrenaline seems to attack my body instead of help it. (It’s hard to explain sorry, but adrenaline has become the baddy!) Boosting our sugar levels will not give us a burst of energy like it once did when we were healthy. This condition seems to be the exception to the every rule.

My body sometimes reacts to eating meals. I am in the process of dissecting whether it is a certain food type that triggers this. I have cut out gluten and lactose which is helping stop the stomach pain I get, but the ‘crashes’ after eating are still occurring. My extended family had to witness this for the first time the other day. I never wanted them to have to see me like that as I imagine its very upsetting and unsettling. They usually only see me at my ‘best’ but as we were all staying together for a few days it couldn’t be helped. These crashes are just a normal part of my life now. How to describe a crash? Losing control of my body temperature, becoming temporarily paralysed (yes really), dizzy, faint, nausea, cold sweats, tremors, extremely weak legs, incredibly slurred speech if/when I’m able to speak, involuntary tears, not able to get my words out correctly or form a proper sentence…

M.E has affected my heart too. This is very common. Two years down the line and I can still be scared of the palpitations and seemingly irregular heartbeat. My breathing is involuntarily affected too. Now that I am used to them though, I do not panic like I once would have. I have become very good at staying calm. I seem to take it all in my stride most of the time. These symptoms are the norm for me now.

An itchiness under the skin is another symptom that I would never have associated with an illness where sufferers are ‘just tired’. The worst is when it happens under my scalp. This is usually how I can tell if I’ve overdone it. I get the itchy feeling (like insects crawling around under your skin) all over my body but these days I notice it most on my brain. When this happens it is definitely time for ‘purple time!’

Those of you who have seen me over the past couple of years will know that I now walk at snails pace! I am getting speedier as time goes on but it may become time before I’m back to my best. Recently I have started to take Mr Walking Stick with me if I’m out of the house. I can now coordinate myself to use it properly. Hooray! If anything it is stopping strangers from becoming impatient if they happen to be walking behind me. Using it also stops people from assuming I am a young, fit and healthy woman who should be giving up her seat for those who really need it…

Despite all this, and so much more, I’m not unhappy. Not at all! This illness has become my norm and I have been able to accept it and make changes to fit the state of my health. I have the support of my family and my friends, both new and old and I am happy ‘in myself’ as they say. To sit and ask ‘why me?’ isn’t something I have spent much time doing. It’s not in my nature and I’m thankful for that and so much more. Of course having this illness is far from okay, but it is what it is and I have to get on with it.

This blog is merely to help people understand the condition a little bit better. It is soul destroying to suffer with an illness that is so misunderstood by the doctors and medical professionals who should be helping us to get better. Being told it’s time to pull oneself together and get better so that ones family can get on with their lives is not something you wish to hear from your GP. If I could make myself better any faster I would have by now. Who on earth would choose to prolong this state of ill health?! If I had any other illness, would we be treated in the same way?

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.

Break time

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

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

I don’t do mornings

Unrefreshing sleep. Bleurgh.

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


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


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


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


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

The big, wide, world!

When you have a condition like ours nothing is straightforward and we are mostly left in the dark to work things out for ourselves. What works for one of us may not work for another, and may even leave some of us feeling worse. Remember that this illness is physical. It is not psychological but neurological. These issues cannot be overcome by mere positive thought and by ‘pulling ourselves together’. Our condition has been likened to the latter stages of life with AIDs and renal failure and to MS…

The advice given by the CFS clinic was to ‘Plan, Pace and Prioritise’. Okay. I have a calendar and have highlighted the days when I have outings planned. Having this visual aid helps me. It makes it easier to space things out as my memory and concentration aren’t wonderful. It wouldn’t do for me to overdo things and have more than one activity in the same week. Sometimes this is unavoidable. It is hard when friends have get-togethers planned that might be in the same week or only a couple of weeks apart. I am unlikely to be able to manage both. I wish I could.


This illness has not only affected my life but everybody’s in it. I am unable to drive myself to catch up with my friends and so someone has to chauffeur me around. Travel, too, can affect which activities or plans I am able to make. It is not the travel sickness that is a problem for me. I can’t quite explain it but travel is exhausting. Perhaps it is that my brain is having to process all that it sees out of the window. Perhaps it is that I cannot put my feet up and so my brain seems to struggle to pump blood around my whole body. Perhaps it is the smell of the car air fresher or the fact that the radio is on. Perhaps it is the noise of the other traffic. Like I said in a previous post, I do not sleep during the day so there isn’t the option of sleeping during the journey. (I only travel in the day.)


I am to prioritise things that I enjoy and that make me happy. At the clinic they called it ‘healthy selfishness’. According to the clinic, happiness can equal energy. I do agree I think.


Planning days out or meetings with friends can be problematic when you suffer from a chronic illness. You have been careful to space out your plans over weeks and months rather than hours and days. You have arranged a lift to wherever you are going. You have a bag packed with your medication, a drink, a snack , maybe a blanket, everything you could possibly need. It has become like having a baby, when you need to carry around everything but the kitchen sink! I can’t afford to go out without this bag of now-essential bits. You have got everything ready for your return; the duvet on your bed is folded back so when you return you can climb into bed without the effort of having to pull the covers back, your pjs and ready for you to step into or you have dressed in clothes comfy enough to sleep in incase you have no energy left to get changed at the end of your day out, your shoes have no laces and so you’ll be able to slip them off more easily, you have a drink and your evening medication next to your bed, your curtains closed, and then…


…you are too poorly to go out afterall.


Anxiety or perhaps anticipation plays a part also. It is highly likely that my sleep will be more disturbed than usual the night before I have an outing planned. ‘Will I be well enough to go?’ is just one of a million questions that I might consider. Like many girls, I think about what I might wear, but I have to plan my outfits carefully because of my illness. I need to be comfortable and maybe even need to wear things that my mum or sister can easily help me out of if I have no energy left to undress when I get home. I also don’t want to get too hot or too cold. If I get cold it can be tricky to warm myself back up again. Getting too hot can trigger a ‘crash’. A ‘crash’ is when my symptoms become overwhelming and I become ‘stuck’ (paralysed) and unable to speak. They’re great fun! Nothing to worry about. It’s all ‘normal’. A drink of water can help.


I have taken to wearing a medical ID bracelet when I am out of the house. It has my name, condition and home phone number on it. It gives me peace of mind and will hopefully help to explain to people why I may have suddenly gone ghostly white, lost the ability to speak or move, etc, etc.


There is also the bittersweet feeling that comes after socialising to contend with. I come home wondering whether my sentences made sense. Did people think I was boring because I don’t always have the energy to be chatty? Did that elderly couple think I was rude for not giving up my seat for them…My silly mind works overtime. If I have met someone for the first time, I can’t help but wish they’d met the ‘Old Anna’ instead of this one.


It can also be hard to see what life in the ‘real world’ is like. It is hard to see what I’m missing out on; the normality of everyday life. People’s lives have continued while mine seems to have come to a stop. I describe it as ‘a comma not a full stop’ but still it has halted. I have no real news to tell. My illness consumes every area of my life. I have decided to embrace this ‘simple’ state though. Exciting news for me is that I managed to make myself some toast. Or even better, boil myself an egg! These are wild times indeed!


As you can see it would perhaps be easier to hide myself away! But I will not! If I am physically well enough to stick to my plans then I will. If I have no plans for a while I might go mad and do something spontaneous like travel to the supermarket with my mum and sit on the bench by the entrance with all the elderly people while she does the shopping. Walking round the shop would usually be too much…


How much activity is too much activity? We are advised to do 50% of what we feel able to do. Good advise actually. But what is 50%? Ultimately, like everything else with M.E, I think it comes down to balance. It is trial and error. There are no set rules or proven tactics that work for all of us. Finding the balance is incredibly hard. More often than not you only become aware of having tipped the scales unfavourably when it is too late. I am still trying to find my way in the M.E. world.