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. 

Anniversary blues

So it's coming up to my birthday, a time which signifies being with the ones I love, pressies and maybe even a cake or two. It also signifies something else though, something which looms larger than any present could. It signifies my anniversary of being acutely ill. Three years will have passed, meaning that I am entering the fourth year of my new life. 

I can't really think of a single thing I'd like for my birthday. Oh, that's a lie, I'd like new make up and a subscription to Gardener's World. But it's just not about presents anymore, I'd be happy if I never received another present in my life, if only I could feel better. 

Yes it's true, I'm having an uncharacteristically blue time of it. Maybe it's the January Blues, the Birthday Blues or the Anniversary Blues... or all three put together. Maybe it's the not-being-able-to-do-the-job-you-love Blues, or the constantly-having-to-put-a-brave-face-on-it-when-you're-terrified Blues, or simply the spending-too-much-time-on-your-own blues. 

At times like this, when everything just feels so out of control, it helps me to focus on what I can control. 

I can control the isolation by chatting online, phoning someone or inviting people to see me. I can't control the fact that I am unable to work, but I can work on acceptance of the situation through my mindfulness practice. I can think of all the other things I've had time to do since stopping work. I can focus on what lovely times I had over Christmas and New Year, and not on the symptoms hanging over me and making me pay.

Oh, and I can have a big shout into my pillow until I'm too exhausted to move any more and slump into it and have a big sleep. I always feel better after that. 

Most of all, I can remember that it has been a particularly bad week and that it won't always be so bad. Tomorrow is another day.

Waving or drowning? The great hydrotherapy debate.......

The Great Hydrotherapy Debate is one which exists not only in my head (as most debates do) but also in the wider community of medical professionals and those who have M.E. 


There are many arguments for and against it, which you can easily find....in general patients will tell you not to touch it and medical professionals will book you right in. But this blog was never meant to be about assembling research, so I will concentrate on my own experience of Hydrotherapy. 


It was recommended to me by many medical professionals. First of all I tried 'dry land' physio. This didn't work for me because I just could not sustain being upright and doing the most basic of exercises. I would break out in a freezing cold sweat (and when I say sweat I mean the clothes-soaking-wet-in minutes type sweating), shivering, passing out and apologising all the while for wasting the physio's time. The physio (who was lovely) referred me for hydrotherapy as she felt it could be a more gentle introduction to exercise for me.


It seemed like a good idea. I love having a bath- it makes me feel very relaxed and really helps with pain and spasms, if only in the short term. So in a way I really fancied the opportunity to try it out. My family and friends were happy that I was going and were all hoping for the best. I tried to explain about Graded Exercise Therapy (GET) and how it had been shown to be damaging for many patients, how it can cause relapse and how I was worried that going to hydro might make me worse. But there was a general feeling of 'if the doctor recommended it then it must be ok'. 


So to understand how hard hydro is for someone with severe M.E you have to remember what my life is like. I am almost entirely housebound and spend many many days in bed. Getting dressed into slouchy house clothes takes up loads of energy for me...and I don't always manage it. I can't get up and down my stairs at home easily etc.... Now for hydro, I had to get up and get dressed, eat breakfast, be driven across town, get out of the car, get to the building where the pool is, sit upright in the waiting room, get to the pool, get changed, and walk up and down steps to get into the pool. Already I am well outwith my energy envelope and I have only just made it to the pool. I have not even started the session yet. 


None of this exertion is taken into account by the physios who simply do not seem to understand M.E. I was so exhausted I couldn't speak on the way home or anything, I was just slumped on the seat and went straight to bed, where I remained for much of the following week. I phoned to say I was too unwell to go the following week, they asked me was I 'just tired'. I explained all the neuro symptoms I had been suffering from- horrendous headache, leg pain, disrupted digestion and bladder function, tremor, slurred speech etc. 


At the next session the physio was better, we did much less and talked about building up slowly etc. However I had the same effects afterwards, despite doing much less, and had to cancel the following week's appointment again. 


I managed fortnightly for 5 sessions but I was unable to do any of the other things I had been managing at home, like making a sandwich for lunch. I couldn't even sit and watch TV with my husband and was in bed for much of the time. 


In the end I called the physio and we decided I should take a break until the New Year and see what happens with my symptoms. Well after a very rocky few weeks I have started to get back to my usual self (still poorly but on a more even keel, able to get out of bed most days and potter around the house). To me it is clear that the hydrotherapy was making my M.E worse. 



So why is there a debate? Isn't it obvious that the hydrotherapy is causing relapse and should be avoided? Yes. But. My legs feel stronger. I have not had to rely on my crutches so much and people have noticed that my walking is a bit better. Is this a result of the hydrotherapy... possibly. 



And the rehab doctor I'm seeing is pushing for it. When I told him I couldn't make all the sessions he told me I 'just had to try because it will help'.He held his fist up with a determined expression on his face when he told me I had to try. Even thinking about it makes me angry as I do nothing BUT try, every minute of every day. 



And it feels so good to be actively DOING SOMETHING to help fight this illness.... even if it is the wrong thing to be doing. Which probably sounds mad. It's so frustrating to be left to manage this illness mostly on my own.



But this is one thing I have tried that I may have to refuse to try again, even if that means losing the support of the rehab team and being seen as not trying hard enough to get better.



It upsets me that I have to rely on my own research and judgement to decide on my treatment, to fight for what works and to fight not to be pushed onto things which harm. We are crying out for more understanding and better treatment for this disease, rather than judgement and blame. 


We've still got a long way to go.