#millionsmissing- we need YOU!

The hashtag #millionsmissing has been popping up all over social media recently, but what does it mean, I hear you ask? 

#millionsmissing is a day of global protest on the 25th May 2016 to raise awareness of ME/CFS and the impact it has on patients and their family. It's about the #millionsmissing from their schools, universities and careers because of this illness. The #millionsmissing from research and development of effective treatments and cures. The #millionsmissing from their families, friends and social lives. The #millionsmissing from the lives they want to lead.

Did you know that in the USA male pattern baldness receives six times the funding that ME research does? And that the amount of money that goes into MS research each year equals 23 years of ME funding? There are many exciting developments happening in ME research but we need more money and time given to developing a cure. Almost all of the money on ME research is raised by patients themselves. This just isn't right.

#millionsmissing has the potential to be the biggest global protest day that the ME/CFS community has seen for some time, if not ever. But we need your help to make it happen- and we need your shoes!

Shoes are being sent to the global protest sites in order to represent the people who are missing from their lives (and the patients who are too ill to attend the protest in person). All you need to do is post a pair of old shoes (or order some on Amazon or EBay and have them delivered straight to the protest address). It won't cost you more than a fiver. And you don't need to have ME- shoes are being welcomed from carers, family or supporters wishing to help the cause. The more shoes we send, the bigger the impact will be. (And all the shoes are being donated to charity afterwards).


I'm sending my old running shoes and the medal I received from running a 10K (with relative ease) in 2009. I have to be honest, running was never a massive part of my life and I don't miss it as much as I miss other things (like walking!) but I do miss that feeling of really having challenged yourself and feeling tired in a rewarding way, with the endorphins rushing around in your body and the fresh air on your face. I don't need to keep the medal. I know I did it. And maybe it will give my submission more impact. 



Only a minority of patients with ME are well enough to protest. Our voices are rarely heard by medical groups, government agencies and the wider public. Social media has helped spread the word, but it's still not enough. In sending a pair of shoes, not only are patients able to participate, but the 'empty' shoes represent something larger and more tragic.  



If you can't send shoes in time, you can still take part by taking a photo of your shoes on your doorstep or at the end of your driveway, and post it on social media using the hashtag #millionsmissing. 




Please. We need you- do it for us. 

• The website: #millionsmissing virtual protest

• Address to send shoes to in the UK (Post by 21st May) : LA Cooper, 25 Grassmead,Thatcham, Berkshire, RG19 4FP (and if you are a patient, fill in this form: patient form)

Contentment vs the 'Want Monster'

I know I've been dealt a bad hand recently... but in general, I am surprisingly content. I see beauty in small things. I have plenty to keep me busy- surviving, pacing, managing the day to day 'Activities of Daily Living' as the medics like to call them. I have created a new reality for myself within my limitations. Life is smaller, but in many ways, richer.


I see friends and family whenever I can manage. (And sometimes when I can't!) But despite the best efforts of those who care about me I spend long periods of time by myself in the house. In the beginning this was a real problem for me, I like to be with people and couldn't get used to being alone. But over time I got used to it and as I improved a little I started to develop my creative side. Now, when I feel able, I craft. I write. I paint. I read. I keep myself engaged in little activities that keep my brain whirring over and my fingers busy. I see my friends when I can, taking time to recover and rest afterwards and cope with the increase of pain and other symptoms. I spend quality time with my parents and have created a garden from nothing with my dad, where with his help I can plant vegetables and flowers, taking great pleasure from watching them grow.


And mostly this is enough.


But sometimes, unexpectedly, the frustration kicks in and I am visited by the 'Want Monster'*.


My life is smaller than I want it to be. I want to be able to jump in the car and visit a friend. It's been ages since I last tried to drive. I want to go out at night to somewhere with loud music and dance the night away. To do the things my friends do. To visit the world, to start a family. To help others. To go for a walk! To have the freedom of choice in what I do.


To not feel pain in my body.


So how do I cope when the Want Monster comes knocking? Sometimes I don't. I shout into my pillow. I cry. But then my family and friends come to help. Sometimes all I need is for them to say "I know"  or "we hate it too" and give me a hug. Sometimes I need my parents to whisk me away to their seaside house for a change of scene and some TLC. And sometimes I just need a temporary wallow in the horror that is daily, chronic illness.


But then, somehow I keep going. I think about all I have learned and I try to see it as a blessing. I pick up my needles and start to make something, or start a sketch, or write to a friend. If I'm stuck in bed I pop on an audio book and pass the time knowing that I won't feel this bad forever.  I allow myself to rest, to shut down temporarily. Slowly things start to look up and I remind myself about how thankful I am that things are not worse, like when I was in hospital. That I can endure this time of change and upheaval as long as I have those that I care about around me. To try and think about the things i CAN do and stop longing for things that are out of my reach. 'Wanting' is a recipe for unhappiness. 


There is no use pining for things that cannot be, that energy is wasted. Instead enjoy those things that can be, the things that are happening here and now. Of course I still want things to be different, to feel well, but I can quietly hope for better days whilst trying to keep the Want Monster at bay.

*I first read this phrase in Toni Bernhard's fantastic book, 'How to Live well with Chronic Pain and Illness' and can totally relate to it, having being visited regularly by the beast.

A new blog name :)

The blog has had a rename..... as feedback was that not many people had heard of the phrase "this is me since yesterday". It is a well known phrase in Glasgow... however..... not elsewhere it would seem! 


I also wanted to take the name M.E out of the blog title as the blog is less about the specific illness and more about how I cope with the situation that I find myself in. Yes I have M.E and my symptoms and limitations are mainly defined by this horrible illness. But I also have other medical issues into the bargain. I am not clear which illness contributes most to which symptoms (and neither are the medics). And just the same as if you were talking to me face to face, I wouldn't be focused on talking about my illnesses. So it seems like a  good idea all round to change the name. 


I can do a lot more when I'm lying down. I often say that I could travel the world if I could afford to go first class and have a bed. Perhaps I should start saving now!! 


So here I am, Girl Horizontal. And yes, I'm typing this in bed! 

The easy life.....

Not having to work must be great, right? Being able to rest all day at home? 

Wrong. Having a long term health condition is the hardest work I've EVER had to do, and I've had some pretty tough jobs in the past. 

There are endless appointments with endless specialists. Consultants in different fields who all need to be seen regularly and updated. Saying the same thing so many times... constantly reinforcing how ill you are. One consultant wants to stop meds, the other says no way, one doesn't know why the other wanted to see you that day. Being batted around like a ping pong ball until they decide who can help and who is better just left out of the picture altogether.

Then there's new diagnoses, different treatment plans, new hope, new disappointments. Huge waiting times for essential treatments.

Then there's the physio. After collapsing at the physio I was referred to the specialist team at the hospital. They said I should have hydrotherapy and home physio. The hydrotherapy caused a relapse so we moved to home physio. However when the home physio came to assess me he was so alarmed by my neurological symptoms (slurred speech, drooping face, flickering eyes etc) that he ran away suggesting I had another CT scan and putting me down as being too poorly for home physio. This resulted in me being referred BACK TO THE ORIGINAL PHYSIO. Appointments. Phone calls. Time out of the house. Time repeating my symptoms and troubles to more and more people.

Then there's the assessments. Assessmets for care. Assessments to prove how poorly you are. Being judged and marked on a scale by a young, healthy person who has literally no idea how it feels to be 33 and feel 100. Working out what you're entitled to and applying for it. Paperwork. More assessments. 

Then there's learning to navigate a previously well-known world in a whole new way. Working out your baseline. Learning to pace and try to prevent symptom flare ups. Riding the highs and the lows without ending up crazy. Learning to be kind to yourself and accepting of your new limitations. Carving out a new life for yourself and your family.



So yes, I have a full time job. A bloody hard one. But, like with many jobs,  I have a team beside me. I have a fantastic GP. It has taken years but I now feel I have a base team of consultants who talk to each other and who I trust to do the best for me. A surgeon who I now know a little better than I would like and who always takes the time to chat to me and reassure me. A specialist pain consultant who doesn't take any nonsense from anyone. A neurologist who understands my condition. And a private physio who is helping me combat my biggest problems with mobility and pain and not simply saying he can't help or referring me somewhere else.


And then the most important team members of all, the ones who make it all worthwhile. I couldn't do any of it without my brilliant husband, family and friends to share the load. 


Without them i'd be retiring from this job too.

Lulu's Adventures on MyBus

I wrote the following in March of this year:


Today I am going out on my own. In my wheelchair. On a special bus. And I am waiting for it to come. I don't mind telling you, I am absolutely terrified. 

The woman from the 'MyBus' scheme has phoned and I've spoken to the driver as they can't find my address (common problem- new build estate!) and they were both absolutely lovely. But still, I am panicking about the whole thing. 

Now, I consider myself to be a strong and capable woman, but I seem to have got myself into a right state about this. 

Things that are worrying me- my neighbours will see me getting into the special bus in my wheelchair so I will be 'outed' as a disabled person, I might feel unwell and I'll be out by myself, my wheelchair might run out of batteries and I won't have anyone to help me, I might make myself very unwell by doing it at all and end up back in bed for days. 

It's a big undertaking. It's the first time I've been out and about by myself in a long, long time. I have a knot in my stomach. 

Please let it be ok. 

Here I go!  
 


Well since writing that post I am  happy to report that I have now been on the MyBus a total of three times. I have gone to my local shopping centre twice and once to my local library. All three times went well, I felt pretty ropey (okay, VERY ropey), but I always do when I'm out and about anyway. Nothing terrible happened and the coffee I bought myself tasted better than any other coffee ever. 
 

It tasted of the sweet, sweet taste of independence. 

Holiday horizontal

It's always exciting when I achieve something I never thought was possible, and this one is a biggy.


I went on HOLIDAY!


To MALLORCA!!!

So surprising on a number of levels. I didn't think I'd manage the flight. I am alcohol intolerant. I need to be mostly horizontal. But with the help of my mum/ travelling companion, the BA staff and a helping of gin (yes, gin) things went rather smoothly. I was helped onto the plane and even got chatted up by a boy! To be fair he was chatting up my mum too, and ended up kissing a woman in her late 80s who was on portable oxygen, but still, it's been a while and I'll take it ;) Yes... it was an interesting flight.

The weirdest bit was on the lift thingy that took you off the plane, as it was like a waiting room that went up and down and drove about. Another new experience to add to the ever-increasing tally........




The travel agent recommended the Hotel Sumba in Cala Millor as being flat and accessible. It later transpired that Saga were a main provider of travellers and that the hotel's reputation for being accessible had spread. As I sat by the pool and looked around, becoming aware gradually of the increasing numbers of walking sticks, crutches, rollators and wheelchairs I suddenly exclaimed "Oh my God mum, we've come to a DISABLED hotel!!!" My surprise was later replaced with gratitude for the fantastic facilities and accessibility. When will I lose my hang-ups about being labelled as 'disabled'? 

You can see how close to the beach we were... and that we could take the wheelchair right down there. Although most of the holiday was spent lying down in various locations, we made it to the beach on two days! One was too windy and cool to settle and the other was glorious. I fulfilled my wish of going in the sea on both days! (Much to the horror of the lifeguard who had seen me hobbling around and was aghast at the thought of me going in the water). 

 Although many hours of each day were spent like this: 

 ...after a few very restful days we managed a mini-adventure on a wheelchair accessible mini-train! 

Of course there were some real challenges. The pain induced by the travelling- not even gin and tramadol could save me.... The lift was so small we could barely fit in it (the wheels scraped off the sides and sometimes the door wouldn't shut!) .... and the biggest challenge of all for me- sitting up at a table to eat meals three times a day. But we got a good routine going- my mum would take me on a quick tour of all the meals (it was a buffet restaurant but really lovely), I would chose, she would plonk me at my table and then she would go and get the food. The alternative was that someone from the hotel would do this but we were managing fine with our own system. The hotel caters for many allergies and intolerances, which are so common with this illness. 




Behold: The Tiny Lift!

And to top it all off, the charging station didn't work for me: 

So..... to summarise, we had a crazy, challenging, painful, wonderful, rewarding and fabulous time. 



With thanks to my lovely, crazy, fun, wonderful mum who makes all things possible.

Soft in the middle - ME Awareness Day 2015

A man walks down the street , he asks "why am I soft in the middle now? Why am i soft in the middle? The rest of my life is so hard".
(Paul Simon- You can call me Al).



I've often been told how brave I am or how well I'm dealing with this. But the truth is that inside, like most people,  I'm as soft as.. well... a very soft thing. If anything, I'm softer than I ever was. Yes, being ill teaches you to be tough, to roll with the punches and all those other cliches.  But us sickies are all softer inside than we care to let on. 



Having this illness drains you of everything you have. They don't come much more positive than me but this is pretty damn hard.

I have been disbelieved by medics and forced by psychologists and physiotherapists to do things which have worsened my condition. Made to feel responsible for my decline in health. I have lost my job. My promising career. Social life. Friends. Options. I have been robbed of the life that I wanted, planned for and deserved.



I had some recent stress in my life which has made me a bit worse than usual. Whether it's a full blown relapse or just a glitch I don't know yet, but with this illness every setback comes with the questions... "Is this going to last? Will I improve again? Will I get worse? When will I be back to where I was?" and these questions will never be answered because frankly, nobody knows.



As treatment after treatment doesn't work (and some even exacerbate your symptoms) the options run out. It becomes a case of 'management' over treatment. Well I don't want to be 'managed'... to spend all my time at the hospital and GP surgery having my symptoms kept under control. I want to be out there living my life like I used to. I want to make a difference.



I have to watch as the illness is given no funding, no interest, no priority. As friends are hospitalised or die of the illness, and others end their lives through desperation and despair. I have to use my limited energy to get a message out there, to campaign for my illness to be recognised as the bastard that it is. 


We don't want sympathy, we just want recognition, research and answers that lead to treatments- treatments that help and do not harm. Surely that's not too much to ask for the 250,000+ sufferers (in the UK alone).


 

I am terrified and desperate and need help. There's nothing very tough or brave about that. But I have a feeling that even the toughest badass out there would struggle with this one.