Birthday girl!

Another year older and wiser!

Yesterday was my 24th birthday. Happy birthday to me! I was made to feel incredibly special and loved with a huge pile of cards and presents and messages and texts. There was also a lot of cake, and when I say a lot, I mean A LOT! Like a trooper I am slowly working my way through it…

To celebrate I have managed to catch up with friends over the last couple of weekends which has been lovely. On Tuesday I made a short visit to the family I used to nanny for which was wonderful too. This weekend I am seeing more friends. Yes, yes this is overdoing it! But if you can’t bend the rules a little on your birthday then when can you? The basics of my M.E rehab are still in place and I am trying to celebrate in an as M.E friendly way as possible…if such a thing exists.

Yesterday I had a party! Not a party in the usual, normal sense, but a virtual party so that even I, and my poorly friends, could attend. I invited my facebook friends to join me in having a cuppa and a slice of cake at some point during the day. All they then had to do was post a picture on the event page of them joining in with the festivities. Over thirty of my friends joined me. I had been at home on my own while everyone was at work and didn’t want to open my presents by myself, but having the online party made me feel like I wasn’t completely on my lonesome.

It wasn’t the poorliest of days but I didn’t feel too clever either. The online party allowed me to celebrate in a way that was much more manageable. It may have seemed pathetic or sad for a person to be spending their birthday online but, like other areas of my life, I had to embrace it because M.E does not allow me to always celebrate in more conventional ways. I will admit I didn’t feel as if it was my birthday. I didn’t do anything particularly different from a usual, normal day. This week my symptoms have left me feeling quite ‘out of it’ and I felt a little flat when I realised that this is my third birthday where I have been poorly. Still, I am so much better than I was on my 22nd birthday so it can’t be all bad. And I wasn’t stuck in bed like I am today. What more can a girl really ask for on her birthday? 🙂 Judging by how horrendous I feel today, it seems even virtual parties and this silly illness shouldn’t mix.

I was a very lucky girl (or do I have to say woman now?!) and so many of my family and friends embraced the virtual party with me. I spent the evening with my parents and all of my siblings eating my favourite food and more cake than I probably should have!

So thank you all. You made me feel extremely loved and reminded me how lucky I am to have you. To my family and friends, old and new, healthy, poorly or otherwise, I love you all for going along with my virtual birthday and for the amazing messages, photos, cards and presents. xoxo

Bubble

I live in a bubble. As M.E sufferers we all do. I no longer fit in to the real world. I can’t even pretend that I do anymore. Every area of my life has been affected. I cannot nip to a cafe for a coffee with my friends because it is no longer that straightforward. I need to first of all be well enough to travel and leave the house. There is the issue of parking to think about. Will it be too far for me to walk to? Will there be a seat spare when we get there that isn’t too near the door so that I don’t get cold, and not next to the radiator so that I don’t get too hot and ‘crash.’ I sound like Sheldon Cooper! If it’s busy will it be too overwhelming for me, with the noise and the number of people and the hustle and bustle? If someone accidentally bumps into me will I be able to avoid going in to shock and turning into a zombie? Will the milk in the coffee agree with me or make me ill? Will it be too bright in there so I’ll have to wear sunglasses on a rainy, wintery day? Maybe people will think I’m a celebrity going incognito… Will I manage to order my own coffee or confuse the waitress with my slurred speech and silly sentences? Will they think I’m strange? I am a product of this illness.

My symptoms make me feel either drunk or hungover all of the time. This adds to the sense of living in a bubble. My mind is not clear because of the brain fog and things can be distorted. I get a bittersweet feeling after mixing with the real world but I won’t shut myself away though. I will face anxieties head on. I use rescue remedy instead of the tablets prescribed to me for anxiety…the tablets mess with your heart beat and M.E. already does that.

I sometimes have to remind myself that to feel poorly and so fatigued all the time is actually not normal. Living in this bubble it is all I know. It is my norm.

The brain fog and living in this bubble have made me less aware of my new life. I am ‘in’ it and so mostly I’m too poorly to be aware of the changes to my life. I think my illness and condition is harder for those around me than it is for me. The bubble acts as a buffer I suppose, but they see the cold hard truth and the difference in me since being ill. It is always hard to see the ones we love the most when they are ill, but my family has had to endure it everyday for over two years. They live with the knowledge that there is no cure or treatment. I am in limbo. Not dead but not nearly as alive as a human being should be. There is nothing they can do for me to fix me. I hate that this illness has consumed their lives too. I cannot put into words how much I despise that fact. They do not realise that everything they have done so far, and everything they do everyday, has led to the progress and improvement I have already made. Without them I am nothing. They have prevented me from losing my marbles.

I have a friend who texts me nearly everyday. She rarely asks me how I am and that is the way I like it. It’s a tricky question to answer afterall. Instead we chat about music we’ve heard, TV programmes we’ve watched, boys, the normal, everyday things that I rarely get to talk about anymore because my life has become consumed by M.E. These messages burst the bubble that I live in. They remind me that there is a world out there that I am still a apart of in some small way. Those messages keep me going. I am not forgotten.
Texting is hard for me now and I find it easier to use facebook instead, and, even though I am sometimes not well enough to reply or carry on with the normal conversations, still she texts me. Nearly everyday for over two years. She has her own life and work and family and friends, but still she does not forget about me. She might not realise it but those messages have helped to keep me going. They have made me feel a bit more normal at a time when I know that I am not. They have kept me sane.

This was a hard post to write. I’m not sure I have got across what I trying to get across. It also is the first post I have written that made me cry while I was writing. Perhaps it was thinking about the effect this plague has had on the people I love the most. That has been, without a doubt, the hardest thing to deal with. I cannot put it into words. They get no respite. I am always there and I am always poorly. I always need looking after. At the age of 23 I need a babysitter. I am classed as a vulnerable adult now. Me. Anna Jones. Ex-Deputy Head girl, captain of the sports teams, deputy manager of a children’s holiday scheme. I owe everything to my family and close friends. I will never be able to repay them for all that they have done. It breaks my heart that I can’t change my situation to make it better for them.

To post or not to post, that is the question.

I have not made this achievement public knowledge until now. Only a handful of friends, and of course my family, know about it.

In May this year I started to try to get back to driving. I passed my test at 17 years old but in October 2010 I had become too ill to drive. It led to me having to leave my beloved job as a nanny. I also lost my independence. I had always loved driving. Absolutely loved it! It has been hard to be ‘driven’ again but if its good enough for K-Middy, I suppose it’s good enough for me!

We live in a small village on a quiet, private road and so for months I would have a go at driving up and down once a day, when I could…getting my arms and legs back into the swing of things…getting my brain used to be alert the whole time I’m in the car. After a while my body adjusted to cope better with this new task and I was able to include ‘driving’ in my baseline targets* by the end of July, with some ups and downs inbetween.

In August, after months of practising on our quiet road, I reintroduced myself to traffic and would drive to the next village and back until I could manage it everyday without my brain or body throwing a hissy fit.

After a while I could manage to drive, on a real road, and listen to music at the same time!!! This was a big deal people. All I ever wanted was to be able to drive by myself again and listen to my music as I drove along. If this is as good as it gets for me then I can cope with that. It is a dream come true. There were tears of happiness the first I managed it.

My long term goal is to be able to drive myself somewhere and then do something when I reach my destination, before driving myself home again. Whether its collecting my own prescription from the chemist, driving to a postbox to post a letter, or going to see my friends. I managed the last one once last year. My brother was my co pilot and he drove us home afterwards. It was all too much too soon though and World War III broke out between my brain, body and I. This time we’re working together at a pace seemingly suitable to all three of us. A very, very slow pace.

I was in two minds as to whether or not to share this post but maybe it shows how complicated our lives are. Nothing is straightforward. Nothing at all.

To share such an achievement in the past has led people to believe that I am better. They then can’t seem to understand why I am not able to lead a normal life and do normal things. They are confused when I still have to cancel plans at the last minute or have to turn them down outright because I have other plans made for the week after and can’t afford to overdo it. They can’t understand why I say I’m still poorly despite being able to do such a normal and ‘straightforward’ thing such a driving. I know that I wouldn’t understand it either, had I not become the sufferer of an invisible illness. Getting back to driving is a huge deal for me and my family, but it is ultimately just a drop in the pond. A tiny step along the long road of recovery.

Remember my illness is ever-present. I never have even a minute of freedom. My vision is constantly blurred and fuzzy and out of focus. My arms and legs feel extremely heavy and weak. I am usually in some kind of pain. I always feel nauseous and so very, very exhausted. There is the feeling of being out-of-sorts/malaise and the cotton wool brain never goes away. However over the last two years I have been extremely lucky to experience some progress and improvement, however slight. The brain fog has improved although it is still there all day every day. With this improvement I am more aware of things and much more alert. Even if I had been physically strong enough to drive, I could not have done until this neurological improvement occurred. It wouldn’t have been safe. My limbs are physically stronger than they were before. They don’t feel it, but they must be for me to be able to drive. I do not feel any better than I did in that dreadful first few months in 2010, but I am able to manage my condition better and I am able to do more than I could back then.

Some fellow sufferers might think I am being naive and looking at my life through rose-tinted glasses. They fear it will all come crashing down around me after I have exerted myself to reach these goals. It may do. It has before. But it will be what it will be. I am sensible and I’m finding my own way, using the advice given to me by the CFS clinic and the things I have worked out for myself.

For the last month or so I have been able to drive for 10 minutes almost everyday. If I could do a celebratory jig I would! I will probably not extend my little journeys until the new year. It doesn’t do to push for improvement too quickly. I have worked extremely hard both physically and mentally to manage and maintain this goal. Blood, sweat and tears, but all the while working with my brain and body for as not to trigger a revolt. It is always, always about balance.

*Baseline targets are the things I aim to do everyday regardless of how poorly I feel, for example: get out of bed, shower, get changed, use the stairs, make my own drinks, and now go for a drive, whilst never pushing my body too hard to achieve them. (Of course on my worst days when I am confined to bed these targets aren’t met but that can’t be helped.) Baseline targets are used so that I avoid the boom and bust cycle, where one blows all of ones energy on a day out, then is terribly poorly so rests to recover, then blows all of ones energy on another day out, then rests to recover…

Embracing it

“Life is not about waiting for the storm to pass, it is about learning to dance in the rain.” 


With a condition like ours you either laugh or you cry. I choose to laugh, for the most part. At home we joke about my inability to help around the house. My brother threatens to stick me in the wheelchair and push it to the dishwasher so that I have no excuse not to help load and unload it. We make light of the fact that I am poorly. We joke that I am swinging the lead, that I am a lazy sloth and fooling them all into thinking I am still ill. We laugh at my situation; at the pace I walk (we say there needs to be two lanes down the hall so that people can overtake me) and at my inability to form coherent sentences. I can take a joke. I am so, so thankful that this illness has not taken away my sense of humour. My friends make fun of me too. I love that the people I love most are embracing my new life with me. While they make allowances for me now, they subject me to the same banter and ridicule that we have always thrown at each other. (On my poorlier days I cannot cope with the jokes and Zombie Anna has no idea what is going on, but I don’t see my friends when I am that poorly anyway.)

Last year I had a children’s tea party for my birthday. Rather than get too upset about not being able to celebrate my birthday in the way I would have liked, I embraced my new restrictions and limitations. In a way I was poking fun at myself. I have become like a child again, reliant on others for almost everything. We played pass the parcel, had a lion piñata, stuck the tail on the donkey, had party bags…the works! I didn’t manage to join in with the games myself but I laughed along and loved spending time with my favourite people. This year I think I am able to manage a celebratory meal in a restaurant with a few friends…keeping everything crossed for next weekend. 

I have a ‘day bag’ that I carry downstairs with me everyday. It has my tablets in it, my activity diary, ear plugs, painkillers, my laptop, mobile phone…I use it so that I don’t have to keep making trips up and down the stairs to get things. Once I am downstairs, I am downstairs for the day.

If I go out for the day I might take a blanket, like an elderly person might have to. I have snack pots in my bag and always a bottle of water. Sometimes I take a change of clothes incase I am unable to control my temperature and the cold sweats make my clothing uncomfortable. It doesn’t matter. If having to take all of these things with me mean I can get out of the house for a little while then I will do it. I have chosen to embrace the changes that are occurring because of my ill health. Admittedly it isn’t always easy but I try my best. Getting in a grump because life isn’t quite going as planned is hardly going to fix my situation is it?! If everything went to plan life would be incredibly boring I’m sure…

Hit and miss

My body seems to pick and choose when it is going to be intolerant to different foods and smells. Like most things with my M.E, there doesn’t seem to be a pattern. Yesterday my brain decided that coffee didn’t agree with it. Today, and nearly every other day, it is convinced it does. This happens with lots of things. Jam is another one. Sometimes it leaves me in horrible pain, sometimes it leaves me bloated, sometimes it leaves me fine. I can no longer tolerate alcohol, even if it’s just a tiny drop in a sauce.

Some days I cannot cope with the smell of people’s perfume. But it is beyond my control isn’t it? I can’t go around asking people not to wear perfume or certain moisturisers or fake tan. Scented candles can exacerbate my symptoms too. The smell of water sometimes doesn’t agree with me. How silly is that?! Oh the joys of M.E.

I am trying, again, to cut out gluten and I do think I feel slightly less ‘heavy’ and bloated after eating sometimes. It is by no means a cure though.
In recent months I have realised that it seems to be the lactose in dairy products that is causing me to be in intense, sharp pain in my stomach. There aren’t too many products that are just lactose free (rather than dairy free) and soya milk and yoghurts are not my favourites! My mum thinks this food intolerance lark couldn’t have happened to a worse person! Apparently I’m very fussy… 😉

I am weighing up whether life is too short not to eat the things you enjoy. When you live a life like ours you have already had to give up so much and now you might have to give up your favourite foods too. I’ve been told that a gluten free diet can help M.E sufferers. While I am willing to do anything to get better, I am in two-minds as whether to stick at it because…well for one, gluten free food tastes like cardboard! How much of a difference is making to me anyway? It’s not that I want instant results. I’ve accepted that with this condition that will never happen. But to be on a strict diet when there are already few things in life we M.E sufferers can enjoy sometimes seems a bit much.