Wednesday, 7 December 2016

Moving to Wordpress

I am currently in the process of moving M.E. myself and I to a new host site.

When everything is up and running, the new website address will be

See you on the other side!

Friday Fright Night

While I am making incredible progress I feel it is important to remind you that I am still so very poorly and so far from a normal, healthy life as society sees it. 

You might remember that I managed a little holiday this Summer. Well, while we were away in Cromer at the end of August, Mr Tree Surgeon and I had our worst M.E. experience to date. In fact it was so awful that I'd say I've only felt more ill and more scared once since my M.E. journey began. 

We were staying in a bed and breakfast (found on Airbnb) and being in someone else's house is not my preferred place to have had such a 'turn'. 
We had travelled the just-under-two-hour journey on the Friday, checked into our room, rested for a good hour, and then wandered the 100 metres to the village pub for something to eat that evening. 

On the shuffle home I was really struggling to make my legs move enough to put one foot in front of the other. We had to stop every few metres or so. Nothing new there. Just the standard exhaustion, muscle pain, extreme fatigue. But when I finally made it up to our room and curled up on the bed things seemed to change.

I have had trouble regulating my temperature properly since having M.E. But this was on another level. I felt cold but my skin was boiling hot, sweaty and bright red. 

I could not move at all or speak, and it was a different feeling to that of the temporary paralysis I have come to normalise. I had an incredible urge to vomit but couldn't. 

My body seemed to completely shut down. It had somehow become overloaded and the system just stopped working. I wonder now if it was just a classic case of sensory overload. People struggle with getting their head around that idea: sensory overload. I simply mean that there were too many things for my body to take in that day - moving images during the drive, the noise of the car and the 'quiet' pub, new smells in the B&B, sitting upright for too long... All these things sound silly and far fetched but they affect my incredibly sensitive body now.  

It lasted what seemed like hours despite my attempts at remaining calm so as not to exacerbate the situation. With cold makeshift flannels on my forehead and wrists, made from Mr Tree Surgeon's (hopefully) clean socks my body temperature started to sort itself out. 

The next day I was strangely functional but very aware of the previous evening and somewhat scared of the lack of control I had had over my own body and the situation. 

I feel it is important to share this side of my life with you. How else can I expect you to understand the severity and complexity of my health condition? So there isn't all that much information here, and little you can do, but on the days when you feel confused about how I can manage to do one thing but not another, I think it's good for us all to be reminded that my health can dip at any time. And it does. You're just lucky enough that you don't have to witness it when it happens.

Sunday, 13 November 2016


All I've really, REALLY wanted for the last six years has been a bit of normality; a bit of the Real Life that I'd lived for 21 years but I couldn't be a proper part of anymore because even leaving the house for an hour would have a chain reaction on my health and write off the rest of the week or month. I wanted to do normal things like watch television without it setting off the nausea and sensory overload and therefore leaving me bedridden again. I wanted to be able to see my friends and my cousins and my siblings whenever there was a get-together. I wanted fun. I wanted independence. I wanted spontaneity. But mostly I just wanted to be normal, to be like those unrestricted healthy folk, and to be like the girl I was for 21 years.

Last night I got to do one of the most normal things of all; celebrate my birthday at a restaurant with some of the most important people in my little world. And it was masterminded by a man who has taught me to love myself at a time when I felt the least loveable. A man who chose me. A man who's given me so much of the normality I craved, only to find out that what we have together isn't normal at all; that normal doesn't do it justice. He told me we were going out for an early-birthday meal but when we got in the taxi I learnt that a 'couple' of my friends would be there to join us. I'd had NO idea. And I consider myself to be quite hard to surprise! 

Mr Tree Surgeon is camera shy so this is the best I could get!

The people around that table will all know that that's a big deal for me and that it means so much. But it all means more than I can put into words.

I have a skewed impression of myself and my self worth now. It wasn't only my health that I lost back in 2010. But with the help of the people round that table, and more besides, I am learning that the core of me is still the same. And I'm still worth giving up a Saturday night for, worth going to all that effort for, still worthy of friendship and love.

It wasn't just a surprise meal out, it was all I've really wanted for the past 6 years. 

Friday, 11 November 2016

Periodic Paralysis?

Although it's been some time since I mentioned it, you may remember that I am currently on a quest to see if I have Periodic Paralysis on top of the usual and delightful M.E. symptoms.

London Calling
The National Hospital of Neurology and Neuroscience

My Wonder GP referred me to the National Hospital of Neurology and Neuroscience after I flippantly mentioned to her that I still have periods where I become 'stuck' and cannot move or speak. As an M.E. sufferer you are largely, if not wholly, left to navigate this new path through life on your own and without medical help, advice or intervention. Therefore I had come to see these episodes of 'paralysis' as normal and just another symptom to add to the already extensive list.

Alas, my Wonder GP seemed horrified to think that I was experiencing these bouts of what sounded like Periodic Paralysis.

So off I went to Queen's Square, London for a day of godawful tests.

My follow up appointment in August was cancelled by the hospital and a new one was made for me for October. It became clear that I wasn't well enough to travel to London (awful place at the best of times!) and get across the City to the hospital. So Mr Tree Surgeon phoned and asked for the appointment to be held over the telephone instead. Huzzah!

I spoke to a different neurologist from the Muscle Channel team to the one I saw back in February but this one was equally as nice. It's always such a lovely surprise when medical professionals treat you kindly as an M.E. sufferer!

To cut a long story short, my test results aren't back yet. Infact my samples haven't even made it to the lab. Yet I refuse to feel frustrated at the NHS or speak badly of it. We have no idea how lucky we are to have such a system. My results will hopefully be ready by the time I have my next appointment in May 2017. Again it will be over the phone.

At this stage we are still unsure if I 'fit the bill' for Periodic Paralysis. The fact that I can never speak during my 'attacks' means I am not a "classic case". I can also swallow a sip of drink if someone puts a straw in my mouth, which again isn't something that's considered to be typical.

So we wait and I continue to ride the wave.

The most wonderful thing to take away from this appointment though is that the doctor was genuinely confused and concerned that I have received no treatment or help or support regarding my M.E. since I was discharged from the CFS/ME clinic in 2012. I informed her that that was quite normal and that really there is no proper help or treatment yet. But her concern will stay with me for a long time and perhaps means more to me than the test results will.

Monday, 17 October 2016

Biting the bullet

My name is Anna Jones, I am not yet 28 years old, and I have just applied to have an Adult Social Care Assessment. 

This is quite far away from how I imaged life would be. Just 10 years I was winning awards for 'sporting prowess' at school. I'd been netball captain for 7 years, won nearly every event I entered into on Sports Day, was put in for every sports team going even if I'd never played it before. 

I got my first job at 15 and worked several different part-time jobs right up until my health suddenly disappeared aged 21.

When I was at university I could pull an all-nighter with the best of them; going out with friends and coming home in the early hours to finish the essay that was due that day. 

Now I cannot prepare meals, fold washing, or even shower everyday. I cannot always get out to collect my prescription or simply to get a blast of fresh air. I cannot unload the dishwasher or hang up the washing. I cannot do these things and so Mr Tree Surgeon has to do them when he gets home from sometimes an 11 hour day or climbing up and down several trees in the pouring rain. Last month he started a new course to gain a new, exciting qualification. He will be busier than ever for the next 12 months. My mum comes round to help me when she can as it is, but I want her to be able to be my mum, and not my cleaner. I want Mr Tree Surgeon to be my boyfriend, and not my carer. A lovely friend of mine has offered to pick up the slack until I have sorted out some proper help. She is coming over again this week to unload the food delivery and prepare a meal. It feels so strange that I, Anna Jones, need such assistance. 

Today I used what little, precious energy I have to ring up the local council and ask for help.

The woman on the phone was so lovely. She was sympathetic and that seemed to break my heart even more; that my situation is worthy of sympathy. She has opened a record file for me and the social care team will be in touch to come out and see what help I need.

To have to list off the things I struggle with, and to look so closely at, and think so hard about each and every symptom and how they make my life as hard as it hurts my heart.

I know I need this help but that fact alone crushes me. 

Wednesday, 5 October 2016

Getting over myself

I have banned myself from doing any housework, even though each little bit I managed was cause for celebration. A couple of weeks ago I had an almighty panic attack out of the blue, as you may have read in Outpouring.

Since moving out of my parents care I have been piling the pressure on myself to do x, y, & z. When I had the energy I would spend it on unloading the dishwasher or putting on a load of washing. I'd even try to hang it out when it was done. 

So I am sucking it up and taking a step back. I've accepted help where it has been offered and I am so lucky and grateful that I have people in my life who will do whatever they can to lighten my load. And all without thinking anything of it. 

My energy is so, so precious and I have been wasting it on having a clean and tidy home. Even with the help of my mum popping by to whizz the hoover round, I have been taking on too much. 

It is quite hard to step back because I have actually enjoyed being able to do things around the house. It's something I wasn't well enough to do for such a long time and the feeling of being useful should not be underestimated. Changing the bed, for example, was something I hadn't been able to do for years and so I loved that my arms were strong enough again to do something as ordinary and mundane as put fresh sheets on my own bed! By myself!!! 

Yet I wasn't leaving enough of my precious energy to do lovely things. There has been no sewing, very little reading, hardly any socialising, and my little driving adventures have completely stopped. I seemed to think I should be doing it all and although I wasn't forcing myself to do these things around the house, I was definitely putting pressure on myself to use my energy in that particular way. I am not Wonder Woman. I am still very ill. Just because I've been well enough to leave home doesn't need I can run my own house in the way I'd thought I would be able to. And that's perfectly fine.

Asking for, or accepting help, is all a part of coming to terms with the limitations of my life with a health condition as severe as this one. Accepting M.E. is vital to move forward and live but my goodness is it hard. It is a process that comes and goes. It is not a constant. 

I don't need a Carer as such. More a helper who can hang up washing, put my clean clothes away for me, do the online weekly shop. 

I have the luxury of having people in my life who will come and take the slack. I just have to be brave enough to let them do that and learn to let go of the guilt. 

I can't tell you how hard that is. 

Monday, 3 October 2016

Away Days

I have been fortunate enough (or perhaps foolish, when you think of how exhausting my body finds being out of its comfort zone) to have had a few little holidays crammed into the last few months. 

I don't need to be told how lucky I am to have been able to manage such a mean feat. Nothing gets my back up quite like someone else pointing out how lucky another person should feel. No-one truly knows how lucky another is. Anyway, yet again I digress. 

As so many of my poorly pals have not had the pleasure or opportunity to see the sea in quite some time I wanted to share some of my holiday photos with them, via the blog. So here they are.

Cromer and Heacham, Norfolk
A few days away with my family

Ashbourne, Derbyshire
A few days away with Mr Tree Surgeon's family

Barnsdale, Rutland
A few days away, only 10 minutes from home, overlooking Rutland Water.

This is always a rather reflective week for me. The first time we came here in 2011 I was incredibly poorly. I say under a blanket unable to do anything more than 'just be' for the entire week. 
This year I have made it to the onsite bar for coffee already!