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Friday, 22 December 2017

Employment and ME


It's nearly Christmas! Foggy is so excited in Thailand, I think he is driving Kat slightly crackers!

In a recent blog, I said that for the first 8 or so years of my illness, I played down the severity of my symptoms and many of my friends didn't realise M.E was a big deal. Partly, due to my own sense of stigma and being uncomfortable being the 'sick' person in my group of friends. It has got me thinking about what life was like when I was employed and how life was back then.

Foggy followers who have supported us since 2014 will know that I used to work full-time in a university library. The timing of the onset of my symptoms coincided with starting 7 years of employment at the library. I was ill throughout my time there, though the severity fluctuated.
Students - avoid these slouchy couches...
they kill your back!
However, at the start, before I was diagnosed, I didn't have a clue what was wrong with me and seemed to be off sick with a wide range of illnesses - 'flu', migraine, vertigo etc. Once I got my diagnosis 3 years later, because I had the label I had yearned for, I simply accepted my symptoms as Chronic Fatigue Syndrome (CFS) and, because I had been told there was no treatment apart from learning how to manage it with Cognitive Behavioural Therapy (CBT), I 'got on with it'. Or at least, I tried to.

For years, I experienced misunderstanding and massive negativity from a few of my colleagues. I lost count of the number of times I was told that I wasn't the only person in the department who had an illness and 'they still managed to work'. I had no answer to this statement as I didn't understand my own illness. If I had the same conversations now, I would be able to defend myself. Yes, I felt like I was being attacked.

I visited the Occupational Health team so many times, my personal file was HUGE! During every visit, I was told that working in a library was not suitable for someone with M.E. I know that now. But, what confuses me is that, if these healthcare staff didn't know much/anything about ME/CFS how could they say that my condition was not compatible with my daily activities? I think I have mentioned this before, I had skin cancer 5 years ago and had been put on uber strong painkillers. They added to my slurred speech. During a visit to Occ Health, I was told they felt I was drunk and was not in a fit state to return to work that day. Well, slurred speech is also a symptom of M.E, they could/should have known that. I didn't want my job to be put at risk so I stopped taking the painkillers asap. So I was continuing to work full time, with M.E and extreme leg pain from the surgery I'd had. I was so determined to not let my health dictate my life. I now know that I was being stupid. No job is more important than my health. Throughout my working life at the library, I downplayed my M.E due to being terrified of losing my job. I ended up leaving because of 'working relationships'. With hindsight, I can see that leaving was the best thing I could have done. I seriously doubt that I would have been able to work full time for much longer anyway due to decreasing energy levels caused by stress.

I have 'met' so many other M.E sufferers that are currently in the same position that I was in at the library. They know that they don't have the energy to work full time, they know that they are literally living to work at the moment. Daily activities are restricted to travelling to work, work, travelling home from work, eat dinner, bed. That's it. They have no life outside of work because they save all their energy to earn money to support themselves. I can 100% understand their mentality. That was me. What I want them to understand is that M.E doesn't give you a choice. You may well reach that point where you simply can't work. Isn't it better to determine your own path? Don't let your health decide when you stop work. Find a plan B contingency plan for when you can't be employed anymore. I am now self-employed (That's why I have no money! If any of you need proofreading/social media marketing support let me know!) and can work to my own schedule, have rest days when necessary, and I can work from home/my bed!! Whoop!

Since starting Foggy work, I have always tried to be open and honest about my symptoms to try and raise awareness. However, I have recently realised that I wasn't as open as I could have been while I was employed because I didn't want to risk losing my job. I was terrified that bosses would think I wasn't up to the job. That was a huge fear of mine.

Us 'mild' sufferers are very lucky to not be bedbound/housebound. 25% of sufferers don't have the option to work. Those of us that can still work need to understand that we are in a privileged position in the M.E community and should take care of ourselves and not be in denial about our limits. It also gives the general public the impression that M.E isn't a big deal, that we are able to function normally. Pretending that everything is fine is only going to damage you and our fight for understanding. I understand that now......do you?

Ho ho ho!

Love from Sally and Foggy (OBVIOUSLY)

Monday, 18 December 2017

Clumsiness and Broken Bones!


Well, it has certainly been an eventful 36 hours! I would like to apologise to my parents for wrecking their Sunday afternoon. We were all cosied up in our living room, all set for an afternoon of Christmas movies. I was having a payback day so was in the mood to be a sloth with very little activity. I fancied fish finger sandwiches (gluten-free of course...not quite as nice as it sounds) and was just waiting for the fishy bits to cook in the oven. I sat back down in the living room and thought 'oooh, did I put it at the right temperature?'...jumped up to go and check and promptly walked into the kitchen door frame. It was a fight between the door frame and I and the door frame won. I was stood motionless like a Flamingo for a couple of minutes while I waited for the pain to subside to be brave enough to take a look under my sock to see what damage I had done THIS TIME. My middle toe was bent in a weird position and the bruising had started already. Uh oh. This was not just a stubbed toe. @&$%!  I had to have THAT conversation. You know the one. The one where you have to ask
someone to do you a favour that will mess up their plans for the rest of the day! Non-UK people, our NHS is struggling to cope at the moment and it is well-known that the waiting times at emergency departments around the country are at dreadfully high levels. I REALLY didn't want to trek to our local hospital and sit in a waiting room for hours, and hours...and hours. So, I called 111, which is the UK non-emergency number to phone for advice. Was there anything I could do at home? The call handler was very helpful and sympathetic, I explained about my M.E and that I was having a bad payback day. He understood the predicament but said I needed to go to A & E because I had broken the same foot last year and the damage could be worse than I expected.

Note to self - DO NOT THROW AWAY THE CRUTCHES ONCE I AM HEALED!! This is becoming a running theme, I may as well keep the equipment close to hand for WHEN it happens again!

Anyway, long story short, we arrived at 1.33 pm and walked into a packed waiting room. We were surrounded by people who were vomiting and coughing. If my family and I managed to get out of there without catching a bug it will be a miracle. Lots and lots of handwashing - OCD style! I hobbled out of the hospital at 4.06pm (I was surprised, I had expected it to take much longer), post x-rays and excellent treatment from nursing staff.  I have a fractured toe. I am amazed at how my whole foot is very painful though. Yet again, I have to spend the next 6 weeks resting my foot and getting around on crutches.

How does this relate to M.E? The accident was caused by my payback day. I was feeling unsteady all morning and my spatial awareness was non-existent. I was feeling so tired I was staggering around the house. I bump into things all the time when I have payback days. I am perma-bruised on my hips/thighs from when I bounce off walls and furniture. Unfortunately, door frames and foot bones are not soft and squidgy!

My M.E deteriorated during my time in the hospital. It was noisy, bright, and busy. Not the perfect environment to be in on a payback day. I could feel my spine starting to go floppy and just wanted to get horizontal, which of course I couldn't do. I couldn't even tilt my head back to rest against the chair as the only wheelchair we had been able to find was broken and moved like a Tesco trolley (non-UK people .... moves badly), the back of the chair only came up to shoulder height. By 3.30pm my head felt so heavy I resorted to balling up my coat and using it as a pillow. I simply couldn't hold my head up any longer. My speech was becoming slurred and I felt like I was moving at a glacial pace.

One positive, my nurse took an interest in M.E. He said he had dealt with children with the illness. He queried my use of M.E though. He asked if it shouldn't be called Chronic Fatigue Syndrome (CFS). I was happy for M.E to be being talked about so I explained why most of us hate the term CFS. I raised awareness with at least one person on Sunday :)

This enforced rest is different to M.E rest. Usually, I try to do a bit of pottering every day, even if my symptoms have flared. Purely so that my body doesn't go to sleep entirely. My activity is minimal though, I'm talking about maybe going outside and feeding our fish or light housework for 10 minutes. Adding this broken foot into the mix means I can do NOTHING. Standing up is exceptionally painful. At the moment, I am unable to bear any weight on my left foot. I have crutches but apart from giving me a greater sense of balance, they aren't helping me to walk and I'm having to hop. Hopping is a MASSIVE drain on my energy levels. Dragging myself up and down our stairs when I need to use the toilet is also killing me. I am resorting to not drinking much to minimise the amount of times I have to trek up 16 steps (yes, I have counted them...slowly).

As I have said in previous blogs, I am a people pleaser. I am already hating not being able to do stuff for myself or help out with housework. My family keeps joking that I had the 'accident' on purpose to get out of cooking/cleaning over Christmas. Trust me, my life would be so much easier if I could get on with life as normal!

I am having a complete rest until tomorrow night when I will be venturing out! Luckily, I had a quiet Christmas planned so I haven't had to cancel plans. But, I will be stepping out for a Christmas dinner and good times with a friend. Every time I break stuff I learn and make mental notes about how to cope better next time. My M.E makes me clumsy, there is nothing I can do about that, but I can learn how to have 'service as usual' with a broken body. Unfortunately, Dad's taxi will be my lifeline for the next 6 weeks....sorry Dad!

Here is the blog from my last hospital experience!


(and Foggy OBVIOUSLY)

Sunday, 17 December 2017

Being Open About Having M.E./C.F.S.


I'm sure I am not alone in that most of my friends do not live in the same city as me. I have 2 friends within a 5-mile radius of my house but most of my friends live at least 2 hours drive away. This means that, due to my health and their busy lives, we rarely meet up and rely on social media and emails to keep in touch. A friend of mine has recently moved into the area after 6 years away. Being an Army wife has meant lots of time outside of the UK. We have been able to meet up regularly and catch up properly over the last couple of weeks. The thing that struck me was that I had M.E 6 years ago, and yet it wasn't something that my friend was overly aware of. I downplayed my symptoms and hid away when I was feeling unwell.  It got me wondering about how and why my openness about the illness has grown and evolved while she has been away.

6 years ago, I kept my illness private. I only told close friends, family and work colleagues(who had to know). This secrecy was mainly due to lack of understanding and my lack of energy to explain how the illness made me feel. If I had to cancel a social engagement, I wouldn't give the real reason, I would say I'd had a hard week, some kind of family issue was going on, or that I had a bug.  As I explained to my friend this week, she only saw me when I was feeling well enough to socialise. She has never seen me when I am laying in my bed unable to move my arms and legs or when my speech/brain are functioning so slowly I don't make sense. That doesn't mean I think she would run away and be unsympathetic, it means that when my symptoms are really bad I just want to be left alone because I don't have the energy to communicate with another human being. As I have said in previous blogs, I don't even see my parents when I am experiencing bad payback. I cope better when I don't have to please anyone else.

Since starting Foggy 3 years ago, I talk about M.E at every available opportunity. I no longer feel the stigma to the same degree. I won't lie, I still experience a huge lack of understanding, ignorance, and nastiness, but I now understand the illness a lot more than I did before. I feel reassured that there is a whole community of people with M.E that are going through the same stuff as me, though in varying degrees.

This month marks my 11 year anniversary of having M.E (diagnosis came 4 years later). In terms of symptoms, I am no better off than I was on day one. My symptoms have changed but thankfully the severity has not. My periods of 'remission' are now much fewer and far between but I'm sure that is because I am now self-employed and managing ME Foggy Dog; my routine is non-existent (I try hard to stick to one though!).  My working life is now very different from working 8.30am-5pm Monday to Friday and doing Foggy work in my spare time. I find it hard to turn off and so pacing and rest are much harder to regulate. I think that by downplaying my illness, the locum who diagnosed me with 'I think you have Chronic Fatigue Syndrome. You should be grateful, you could have M.E...that's so much worse' added to my confusion about my health. OK...let's move on from that stupid/insensitive/incorrect comment and concentrate on the fact that he played down the severity of the illness. I didn't Google CFS to find out more info and social media was not as abundant as it is now, I took the GP at face value and thought CFS wasn't a big deal. I figured that as there wasn't any treatment I would just have to carry on as I had been, it was either that or drive myself loopy trying to fight against something I didn't understand. That meant struggling into work, being very confused by the wide range of invisible symptoms, and fighting for people to understand that I was feeling very unwell. I did not know that there were 17  million other people in exactly the same predicament. That GP's attitude impacted my own perception of my illness for years. I now see that he was unhelpful and insensitive, and there were so many ways that he could have helped. He didn't even tell me that there were charities for CFS/ME patients or point me in their direction for support. I only came across the ME Association when I planned to set up Foggy. I had to type into Google 'ME charities'. The ME Association was at the top of the list. I didn't know that CFS was M.E, and I also didn't have a clue what M.E stood for (Myalgic Encephalomyelitis) or how to pronounce it! I have learned so much stuff since Foggy was 'born' back in 2014 and now I am very happy to be passing info, however basic, on to new sufferers, undiagnosed people, and the general public. Just because we have the illness, doesn't mean we fully understand what is going on!

We are frequently told not to self-diagnose using Google, but I think the ME community would be lost without Dr Google. I have learned so much more about my health using the internet than I have ever learned from human doctors. Now, as an M.E advocate, I meet new patients, or as yet un-diagnosed people EVERY WEEK. They are all experiencing what I did at the beginning. That needs to change. So many people are struggling without knowing that there is support available and that there are people fighting for their illness to be recognised and for research to be funded.

Sorry if this blog doesn't make loads of sense, I have brain fog today!


and Foggy (OBVIOUSLY)