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. 

INVISableism : Blogging Against Disablism Day

Being prejudiced or discriminatory towards people who are disabled has two names: disablism and ableism. Only something so completely mad and pointless could have two seemingly opposite names which mean broadly the same thing. One is spelled with an 'e' (ablEism) and one without (disablism).. which actually is a completely pointless observation but one which bugged me all the same. 



But let's just go with it. But because it's so ridiculous and for the purposes of this article lets introduce a third term- which I will call ..Invisableism.  Because I'm going to talk about when you have a disability that is invisible to others (as opposed to being discriminated against on behalf of the fact that you are completely invisible. Something, which you will see, is not a problem in this case).



There is no judgement here. I used to be just like you- able to stand up for as long as I wanted, walk, concentrate for long periods of time, work, socialise whenever I wanted, walk, stand up for as long as I want, walk....stand up.... walk ... and I must admit that I only knew personally ONE SINGLE PERSON who used a wheelchair. I wasn't a stranger to disability on the whole- as the daughter of a social worker and a nurse one could not be completely immune to social justice issues. I had also spent some time working in a school for children with complex special needs which included being the one-to-one carer of a teenage boy who was a severe epileptic and wheelchair user. I was well in tune with learning disabilities but as a 20-something adult, the only wheelchair user I knew outside of work was a friend of a family member.



And I am now ashamed to say that I did not give physical disability a thought. I never did things thinking how difficult or unachievable it would be for someone with a physical disability, and, worse than that, when I went to gigs I actually ENVIED people in wheelchairs because they got great seating. I am a terrible person, I know.



If you haven't stopped reading out of sheer contempt for the old me, then I'd love it if you would read on. Because shortly after my 30th birthday I became a Disabled Person. Which was devastatingly difficult. But I didn't have any problems as long as I looked disabled enough.



And unfortunately (and fortunately) for me, unless I'm using my wheelchair or I have a bad case of the BESEs (big-eye-small-eye- see photo) ... my disability is largely invisible. Except if you live with me, when it is glaringly obvious how different I am to a fully functioning human being. And herein lies the problem. Society at large has a very prejudiced idea of how a Disabled Person should look and act. 

Bad case of the bigeyesmalleyes!

The biggest example of this is when I am using my wheelchair. People smile at me (so much so that I have exhausted myself and had to go home almost straight away just by the sheer effort of smiling back at everyone).  People are so helpful, caring, thoughtful and chatty. They want to help, to brighten my day, and by and large seem far less judgemental than i feared they would be (remember, I am a newbie at being disabled and rarely get out and about, thus my own preconceptions about how I would be treated). I began to believe that this was how it would be, and that my fears about 'outing' myself as a Disabled Person were unfounded. 

A lady followed me around a shop just in case I needed anything from a top shelf. I got stuck in a doorway and two police officers came running to help. A friend of mine found their wheelchair too wide to fit through a doorway and was CARRIED through the doorway by two helpful strangers (she didn't have the heart to tell them she could actually weight bear and walk a little). You get the picture, people bending over backwards to help.



Yet swap the wheelchair for a mobility scooter and things change dramatically. 



One day at the local shopping centre that I occasionally frequent (due to their excellent Shopmobility services) they were all out of power chairs. I had to use a mobility scooter instead. I was wary of using one of these as in my mind they are synonymous with crazy elderly people (another of my own prejudices creeping in) but decided it was worth it to get my shopping fix. Things could not have been more different to using a wheelchair. People did not move out of the way. People looked and tutted and glared at me as if I was personally wasting their shopping experience. I got no helpful offers, no smiles and no chat, not even any eye contact. Yet I was the same person, with the same disability. The only difference I had made was my mobility device. 



It would seem that someone in a wheelchair is Legitimately Disabled, whereas someone using a mobility scooter is not. There is some more information on the reasons for this in this article: "The Trouble with Mobility Scooters"  however the main reasons are supposedly because of the rise in use of these scooters by people who do not strictly need them.



There are similar discrepancies apparent elsewhere, for example with walking sticks vs crutches. When I am using my walking sticks people scramble to find me a chair, ask if I'm ok, if there's anything they can do to help. No-one asks what happened to me, why I'm using sticks.  But when I'm using my elbow crutches I get constant questions about why I'm using them, such as "What happened to you?" said in a jokey voice, or "What have you done to yourself?". Again it would appear that using a walking stick or two means you are probably a Disabled Person, whilst using elbow crutches means you've probably had a leg injury. Most likely ski-ing or some other fun and exciting activity which makes a good story. 



And when trying to park in a disabled bay when with my friend who happens to have a big Mercedes 4x4 as well as a sporty little two seater we get tuts and stares galore. I can only assume people think we are abusing the parking space because we are in a nice car. One day I almost put down the window and shouted "DISABLED PEOPLE CAN HAVE SPORTS CARS TOO YOU KNOW!!!!"  but I'm sure my friend was glad that I showed some restraint on that day. 


So, as a summary, here are the misconceptions and realities as I have discovered them.

Misconception 1: Person in a wheelchair = legitimately Disabled Person, who (through no fault of their own) is unable to use the lower half of their body. This person must be helped however possible as they are a poor wee soul. 

Reality: Anyone can buy and use a wheelchair. Anyone receiving a wheelchair distributed by the NHS (like  mine) are of course assessed but others are not. Many people who use a wheelchair have limited use of their lower limbs (see next point).

Misconception 2: Person in a wheelchair who can get out and walk a few steps or stand up to reach something on a high shelf = FRAUD! They were using a wheelchair but THEY CAN ACTUALLY WALK!! These people are to be scorned, stared at, tutted at and generally judged in an open and harsh manner.

Reality:  Many wheelchair users can transfer their own body weight, stand up and walk a little. In fact, you wouldn't sit down all day if you didn't have to so it makes sense for a wheelchair user to stand up and have a wiggle and stretch if they can.

Misconception 3: Person using a mobility scooter = Lazy. If they were genuinely disabled they would have a wheelchair. Do not move for these people or let them past or help them in any way. Draw a dirty look and comment under your breath if they dare to get in your way. 

Reality: Whilst it might be a reality that mobility scooters are becoming more popular with those who might not qualify for an NHS wheelchair, there are many people for whom mobility scooters will transform and enrich their lives.  Many people who use them are overweight because their disability prevents them from exercising or (as in my case) their illness means they are extremely immobile and they are at home all day and completely reliant on others to feed them. Their illness may cause bloating and fluid retention and their medications may contribute to weight gain. The point is that just because someone is overweight does not mean that we should judge them.


Misconception 4: A person in a fancy car parking in a disabled parking bay must be abusing that bay. There is no way they can be disabled driving a car like that!

Reality:  Er..... really? How ridiculous. 


Misconception 5: That person cannot be as sick as they say they are, I saw them at the shopping centre on Tuesday and they looked fine!

Reality:This is a misconception close to my heart. If you know a  bit about my story then you will know that I have a fluctuating condition. There are days when I feel well enough to go out for a short period of time with a friend or family member. Most of my Facebook photos are me smiling, having fun, sitting in the garden, doing some crafts. When I do go out I spend time dressing nicely and doing my makeup because it makes me feel good. These are the parts of my life that make me happy. I am not going to hide them away in order to maintain my "ill enough" persona and will not apologise for this. 

I could go on. I have MANY more stories of invisableism. Such as when I slur my words because of my illness and people assume I am drunk. However I'm pretty sure I have got my point across and we all want to finish reading this post before we grow old.


Invisableism is a real thing. It affects my life. I was guilty of it before I became a Disabled Person but now I understand. A disability can be invisible and it is not up to the general public to judge if a person is 'disabled enough' or not. Life is hard enough as it is, let's stamp it out!




This post was written for Blogging Against Disablism Day. For more posts and info go to Diary of a Goldfish. 

Let's do the time warp agaaaaaaaaainnnnn.......

I am a real-life time traveller.


I can go forward in time. 
When I am having a hard time with this illness the days merge into big blobby dreams of duvets and discomfort, drowsiness, distant voices and a difficulty telling dreams from reality. Days can pass like this in a fog. I hate it when this happens, when I'm really unwell and I just can't account for the many days I've been in bed. 
 

In the early days of my illness many months passed this way. But now I am lucky that this only happens on bad weeks or for a week or two at a time. How can I say I am lucky? Because for some severe sufferers they have been in this state (and worse) for years or even decades. Although it hasn't happened to me for a while now it happened both this week and last; last week when my brother asked me if I'd been sleeping or if I'd just been lying there all day I couldn't say. The truth was that I had no idea. Time just seems to move forward, like the world has kept turning and I have hopped off. Several days may have passed by the time I have managed to hop back on board. Like I have literally gone forward in time, with no recollection of what passed in between.


I can stop time.  
There are days when time slows almost to a complete standstill. I feel trapped in this never-ending world of illness and boredom, waiting for my loved-one to come home and see me, for something to change in this illness, for something to improve. Looking at the clock as I lie in bed unable to sleep but unable to get up. How can it only be an hour that has passed? It feels like a life time! Time to think. Hmm...

 But even on the days which drag, the months and years disappear in the blink of an eye. I decided when I was well enough I would celebrate my 30th birthday with a big party, no matter how long it took to get better. I sometimes wonder if I'll be having my 30th celebrations in my 40s, looking back and wondering where those years went, the M.E Years.



 Most of all- I can MAKE TIME COUNT.
 Like all good time travellers, I have the utmost respect for time. You may think that being home all day without a job means that you have lots of time, but you'd be wrong. Because M.E means that you only have short windows of time in which to do anything, or, like on many days, the window stays firmly shut except from the absolute necessities (like going to the loo). On a good day when out and about or managing an evening at a friend's house you know you will suffer for it during the next and following days. So you learn to savour every moment. To spend your energy on the things and people that mean the most to you. To live in the moment.


Just before Christmas we had a night with some friends. It was the first time I had felt almost normal in over three years. We couldn't believe how well I had coped. Well it happened again, a couple of weeks ago for a friend's birthday.  Out of the blue, like a gift. The first time was December. The next time was March. Most people measure their nights out on a weekly basis. Mine seem to be quarterly right now! That might seem terrible, but after having none it is wonderful and I am truly thankful. I just seem to be on a different calendar to most. 


For now. 

Are 'online' friends real?

This is a post about online friends, meaning friends that I have made contact with online but have never actually met 'in the flesh'.

So are online friends real? Yes. Thanks for reading!





Hee hee- no I'm not going to end here, although it would be fun writing the shortest blog post ever. I'm going to explain my thinking.


You all know a bit about my story, going from being an active sociable soul to being housebound and potentially very isolated. But I took refuge in the things I could still do, like going online and I used this to reach out. I joined a support group to help me understand what was happening to me, and this was the best thing I could have done. I made contact with other people with the illness, lots of whom came and went, but a few that I really got on well with and seemed to gravitate towards. Over time (around a year) I got to know these people, I saw photos of them, sent and received personal messages and befriended them outwith the confines of the blog through Facebook, sharing home addresses and exchanging mobile numbers. * This led to exchanging letters, presents and other surprises through the post.

When extra poorly, a card would appear through the post just when I needed it most, and it meant a lot to come from someone who was poorly themselves, thinking of me instead of themselves. I found my new friends to be strong and inspiring.

But its not all about being sick together. We celebrate the small achievements and the funny sides of being ill. We share other interests like weight loss tips, art, gardening, crafts, poetry, TV and films, books. We talk about everything and nothing. We laugh together and cry together.

But are these friends 'real'? Or do these friendships only exist in cyberspace?

I was talking to one of my online friends one day about how good it was to be friends but how lovely it would be to live nearby and just pop over for a cuppa and a lounge around. How it'd be so lovely to be friends 'in real life'. I made a distinction between my online friends and my real life friends. My friend replied that this WAS real life, that we WERE friends in real life and that she called the 'real life' friends that she has 'flesh friends'. This avoided the implication that her online friends weren't real. I thought this was fabulous (but only wish that 'flesh friends' sounded less like something from Dawn of the Dead).

I define a friend as someone who is there for you. Someone who cares, who makes you laugh, who listens and supports. Someone you care about back and want to support. Someone who shares laughs, tears and interests, someone you want to spend time with.

Why is spending time with someone online any less valid than seeing them in the flesh? That person is real and exists in a physical sense ** albeit not in your living room.

And even when you do not have an established friendship, acquaintances can provide a lot of comfort and support too. Instead of bumping into friends of friends in the outside world you might join a FB group on crafts, for example, and meet someone who likes the same things as you. A positive comment from them on a photo you share can mean a lot.


 But don't just take my word for it.... Here are what some of my online friends say: 


 
Defining a friend is always a tricky one, for me it’s someone you care about with whom you share things, since getting poorly and being mostly housebound the things I have on offer to share have changed. They are still important and valuable and worth sharing but not the ‘things’ a healthy person might share. So those who I thought were friends slowly drift (and in one case very suddenly after declaring ‘you’re not disabled! my thoughts really, well you try living with Severe M.E). You lose touch, I couldn’t talk about work, or nights out, big holidays or having children. A lot of the time I just couldn’t talk, my body and brain failed at even the simplest of communications.

So I turned online and found friends and yes they are real, we share our hopes and dreams, our mistakes, our grief and sadness, we care about each other. I celebrate their achievements and good news from them makes me smile, I cry with them when their journeys are hard. When my life gets hard I seek comfort from my friends, when it’s good I want to share and that now means reaching for my laptop.

So, it’s not how ‘normal’ people do it; I have never and may never meet these people, we don’t share visits to coffee shops, work places or clubs but I do sit on my sofa and have a cuppa with them and share things, to me they are real, they are true and they matter". (Tareen)



 "To come to rely so heavily on people you have never met for emotional support must seem so odd. I'm sure it would to me if I wasn't in this situation. But hand on heart these people, that I've never met, have become a life line. They live in my computer and I meet them there every day. Obviously you can't often beat a real life bear hug but to have people in your life who actually understand what it is you're experiencing as you navigate your way through chronic illness has been the saving grace in all of this. My journey would be so bleak without them."  (Anna Jones)

 

"One of the best things about online friends is that on things like Facebook and forums, you can reply at your own pace and in your own time. No need for immediate responses, you can dip in and out of conversations when you're able - something you definitely can't do in real life! I can go weeks or months without seeing anyone except my mum and my boyfriend; without my online chums, loneliness would get overwhelming. Before I found my online ME buddies, illness completely isolated me - now I am part of a community of amazing people who are only a keystroke away. The Internet is a blessing when you're this poorly. Trust me". (Rachel)




"Having been ill since I was eight, and not being well enough for school, college or work, one of the things I've most struggled with has been the isolation and lack of friendships. It's so hard to meet people, let alone maintain relationships when your whole life centres around the limitations of being severely ill. For the first fifteen years of my illness, I didn't have internet. Experiencing this level of isolation throughout my formative years was detrimental to my sense of self. Now, being a member of online groups of similarly affected people with shared interests and hobbies (such as arts and crafts) has literally changed my life. I no longer feel like an outsider who wouldn't fit in anywhere. I'd never experienced being part of a community/group of friends before. Now I have friends who I've met or spoken to in person after 'meeting' on Facebook as well as sharing support, laughter and inspiration whenever I'm up to reading my phone and either typing or dictating into it. I've also discovered my worth as a friend and it feels great to be there for others. Thanks to virtual events hosted on fb, I even attend parties and rarely miss out on interesting conversations as you can join in with comments when next online, regardless of when the conversation was initiated. When it gets too much for me, I can put my phone or laptop away until I have enough energy again. These are real friends in a situation that caters perfectly to those with my kinds of needs. And, as both healthy and disabled people alike use Facebook, I can connect with all different people who I'd otherwise lose touch with and can feel a member of the bigger world rather than just a ghetto for ill people. Long live online gathering places, I say!" (Germaine)



"The benefits of online sickie friends is that they just get it! You don't have to explain and you get honest supportive understanding responses. Which i value highly.
I appreciate my healthy friends too but they don't get it, as much as they try to and then you get the cliche answers about staying positive and it will get better or well at least you have this etc or they try and give answers to fix it when it cant be fixed or tell you you should have this in your diet or start doing this as it will make all the different etc
Sometimes you just need people who understand and go yes its really crappy and it really sucks but i totally understand and I'm here.
Plus healthy people don't feel that comfortable taking the piss out of your illness or wont laugh with you about it. It gets uncomfortable and you get sympathy instead, which is not what you want when you are trying to laugh about dropping something or walking into a door or sticking something in the fridge that doesn't belong there. Fellow sickies can help take the piss and make you laugh and make it that bit easier to live with." (Name withheld)
 


So in answer to my question it seems to be unanimous- yes, online friends are real friends. A few have been more of a friend than some of the flesh friends that used to be in my life. So don't get too hung up on the distinction, stay safe, and when you make that connection you might find over time that an  'online friend' becomes simply 'a friend'. 

*A note of caution about internet safety here, you know the drill. Be very careful about who you befriend online. Never give out your address or telephone number to people you don't know. This happened for me after a long period of building trust. If you arrange to meet in person, meet in a public place and even better, take someone with you.Remember that people are not always who they say they are online.






** Except when they do not and are doing something very unsavoury. See above warning.

Hello P45

Dear P45,


I managed to delay you for a while but you have arrived to darken my doorstep. 

It was great, the working life, I loved it, I really did! But when I got sick so suddenly and severely I had no option. I did everything I could to get out of the hospital and back to work as soon as I could, I clawed my way back over many, many months to working part time. 


But it didn't work.


I tried it all. Working alternate days with a rest day in between. Lighter duties. Working in the mornings only. Working in the afternoons only. You tried to help me but nothing worked and I just got worse and worse. Then the other health issues got worse. I thought I'd be back after the operations, but I just couldn't get well enough again. 


You did what you could, but you couldn't employ someone who simply wasn't well enough to do their job, or any other job. It was all over.


So, here you are. My ticket to unemployment. The end of my career. 


Hello P45. 


Yours regretfully, 

Louise x

What do spoons, beans, gorillas, credit cards and envelopes have in common?

They are all ways of describing how M.E affects energy levels! It's a very difficult thing to get your head around (even for sufferers) and I have found these to be the best....


1. The Spoon Theory

This is the one you are most likely to have heard of.

 Link to The Spoon Theory

Summary: Christine Miserandino came up with the Spoon Theory one day whilst sitting at a cafe with her friend. It was a friend who understood the illness and had seen Christine unwell but couldn't quite put herself in her friend's place to imagine what it felt like to be so sick for so long. Christine grabbed some spoons to explain and 'The Spoon Theory' was born. 

Christine MiserandinoChrstine Miosaerandino cam

Christine Miserandino

Christine Miserandino

The Spoon Theory is based on the idea that everyone has a number of spoons (stay with me.... it does make sense.....) A healthy person has an unlimited number of spoons. A sick person has a very limited number of spoons. A spoon is used each time you carry out a task, so in the example they speak of getting ready for work... a spoon for getting out of bed, a spoon for showering, a spoon for getting dressed, a spoon for making breakfast etc. Before you know it you have run out of spoons and you haven't even left the house yet. 


Sometimes in a day I have only 5 spoons. If I use one each time I go to the bathroom (because I have to get out of bed, walk to the bathroom, wash my hands afterwards, get back into bed) then maybe that's all I'll be able to do that day. Some days I have enough spoons to have a shower. Other days I have enough spoons to draw or knit, or go out for an hour or so. It just depends on the day. Bad days = less spoons. 

You might see chronically ill people refer to themselves as 'spoonies', or hear someone offering to 'send spoons'. This is where the spoon references originated from. 

BUT IT'S NOT AS SIMPLE AS SPOONS, because in M.E there is a cumulative effect of overdoing things, or 'Post -Exertional Malaise' (PEM) which means that doing an activity not only uses up spoons, but has an ongoing impact on how many spoons you will have the following day and the day after that.  Which brings us nicely on to beans.




2. Beans 

From the Sweet Briar Sisters (click here for link)


There's not much more to say about this one, it describes life with M.E so well.... except that I love that they prioritise fun and that some things are worth the crash. 

But...... please don't decide for me, it's up to me to decide if it's worth the crash or not thank you very much!









3. The Gorilla in your House

The Gorilla in your House is a useful way of helping others to understand what it is like to 'acquire' a disability by comparing it to suddenly having a gorilla in your house (and the upheaval that this goes on to cause). This resonates strongly with me because in my journey with M.E I have become significantly disabled and have had to make adjustments to my life. The blog post talks of adjustments and acceptance of the gorilla rather than trying to force it to go away, very wise words. 

Read the blog post here 



4. Credit card

At a recent conference, Dr Van Ness described having the effect of exercise on patients with M.E and explained it in terms of oxygen deficit. His research showed that patients with M.E had a much higher oxygen deficit after exercise than healthy controls, and he described this in terms of borrowing on a credit card.

For example, an athlete borrows at a rate of 5%, meaning he has little interest or payback afterwards. A healthy person borrows at a rate of 10%, still fairly manageable to pay back. However a person with ME has a 50% rate of interest. So if all three did the same activity, the person with ME would be paying for it long after the others had cleared their debt.

Hopefully that makes a little bit of sense, please watch the video to hear someone who actually knows how to explain it!

Watch the video here 



5. The energy envelope

The final example I'll include here is that of the energy envelope. The energy envelope contains your available energy for the day. (You could say it carries all of your spoons!) If you plan carefully and pace you can live within this amount of energy, without pushing your body to do too much.This is called 'living within the energy envelope'. Living within the energy envelope helps to prevent crashes and get you out of the 'boom and bust' cycle.


The concept of the energy envelope helps me to understand and accept my limitations, and therefore work within them in order to gain some sense of control. If you consistently stay within your energy limits there is a chance that you may be able to gradually increase them.... exciting stuff. It's a way of introducing pacing into your life, and it is definitely worth introducing pacing into your life. Pacing, or living within my energy envelope has had the single most important effect on my symptoms.



 So..... the moral of this post? Use your spoons wisely, keep some in your envelope if you can, look after your beans and accept the gorilla in your house. Easy.
















 

Identity Crisis

When I succumbed to acute and severe M.E there were a lot of changes in my life, some of which were sudden and un-ignorable, and others which crept up on me slowly from behind. Some of them were caused by others, some were changes directed by me. Some were unavoidable, some were conscious choices. Some changes filled me with the grief of frustration and loss, and others swept me up like a breath of fresh, morning air. 


The problem is, when you are in deep like I am, you can't just choose the nice changes or the ones that make you feel good. In fact, change happens all the time, to everyone, and you cannot resist the changes thrust upon you any more than you can choose to be well again. However, when change happens so suddenly and thoroughly, adapting and growing with it seems to be the only way forward.


The change which has been most difficult for me to adapt to has been losing my sense of identity. Indeed I've written about it on this blog before; the sense of 'Louise-ness' that I long to cling onto.



The biggest identity-busters have been...


1. I became 'Sick'


.......and felt unwell constantly. Hospital and the doctor's surgery are now my home-from-home. I could no longer do all of the things I used to do. I couldn't play in my orchestra. I couldn't jump in my car and go anywhere. I couldn't socialise with my friends except for in quiet, short bursts as it made me too poorly. I couldn't go shopping, eat out, go and see a film, make dinner, sit and watch telly, listen to music, walk. I couldn't dressed in nice clothes as I had to be comfy.   I lost my independence and had to ask for and accept help. DIY became ASETDI (Ask Someone Else To Do It).





2. I became 'Disabled'


I had to use a walking stick, which became elbow crutches and finally a wheelchair. I no longer walked beside my companions but sat in front of them. I felt like I had somehow become a lesser version of myself, a broken version. The faulty version. People were waiting for me to 'get back to normal'. I was waiting for me to get back to normal. 

3. I became 'Unable to Work'


I was a Super-teacher. I loved my job. I am starting to cry as I write this. I have not accepted my inability to do to job I love quite as much as I might let on. I was good at it. I loved the pupils and parents, the school inspectors told me I was 'Excellent' (a loaded term in educational assessment!). But most of all I LOVED spending my days surrounded by children, and friends will tell you that since qualifying I had always described it as a privilege to do the job I do. Did. Past tense. 


I identified myself as a professional. A full-time worker. I read research. I kept up with developments in education. I paid into a pension. I contributed to a mortgage. I wore smart clothes during the day! I talked about work with colleagues and teaching friends. I met friends for coffee on the way home, I was glad to put my feet up at the end of a long day and feel the satisfaction of a hard day's work.


What would I talk about? This was who I was. 



Except it wasn't. 



Life went on and along the way I gained some more Louise-ness.


I used money which my friends clubbed together and gave me for my 30th birthday to fund a starter course in Mindfulness, which turned out to be the best gift I could ever have been given. I learned how to be happy within myself, regardless of circumstances. I learned  how to accept my body as it is now without wishing for it to be different. I learned to live my life in the present moment without wishing to be better or cured. I would never have found this path if I had not fallen ill. 

In fact if I could chose being well and not having mindfulness or being sick and having it, I would chose to be sick. Crazy, eh?



I started to write, draw, paint, knit, crochet, garden, think outside the box, care more about people and focus on the good. I found out who my real friends were and concentrated my energies on them. I increased my circle of online friends and now send and receive beautiful letters and gifts. I rediscovered my creativity and had time to nurture it. I spent a lot of time with myself and gave myself a right-good-talking-to. I discovered my identity was made of more than my job, my health and my able-bodied-ness. I discovered that you could make up your own words as long as you put dashes inbetween. And I got pretty damn good at ASETDI.



I am still professional, even though I no longer have a profession. I still read research, even if it is about the right plant types for clay soil instead of advances in teaching pedagogy.  I still talk to my friends, even if it is no longer about teaching but about life. I can still meet friends for coffee, even if it is only when I'm well enough and if they take me and bring me home. I still wear smart clothes during the day..... ok... I'm lying.... I dress almost exclusively in PJs or clothes that look as much like PJs without being actual PJs that I can possibly get away with! But you get the point.....


Identity is a lot of things. But mostly it is me. And I am more me than I have ever been before. And do you know what? It's not actually that bad.