Fidgeting With Hyper-Mobility Syndrome

Hi,

I'm off to Amsterdam with Hattie the Otter and family later today and I have told Sally to get some work done while I am away. She wants to tell you all about how her Hypermobility Syndrome symptom (HMS) of fidgeting (not really a symptom but you'll see what we mean in a bit) links in with when she has reached her limit and it's time for bed.

Hello,

I wrote this blog post a few years ago Foggy Just Thought Sally Was a Bit Bendy, in it I explained my health timeline and how Hypermobility Syndrome is common in people who also have ME/CFS. The longer I do my advocacy the more I realise that our illness intertwines with many other chronic illnesses.

Recently, I started to notice that I fidget around 10 minutes before my body tells me it's bedtime. I've written many times about how pacing and setting my own personal bedtime routine has trained my body to shut down for sleep by

10.15pm EVERY NIGHT. There is no such thing as a late night or lie-in in my M.E world! It's very difficult to force myself to stay awake later than 10.15pm and if I ever manage it, boy oh boy do I pay for it! That extra hour or so watching the end of a movie could affect my energy levels for a couple of days afterwards. I did wonder if the fidgeting was an M.E thing (rubbish memory - I had forgotten that I've done the fidgeting thing for decades!!)  but I saw the following tweet from @Ehlersdanlosuk  (Ehler-Danlos Support UK) today,

Children hEDS will be more ‘bendy’ than their peers & hypermobility can cause problems. Instability of the joints might lead to dislocations or subluxations (partial dislocations), children may suffer from pain, their joints may click, and they may fidget to relieve discomfort.

As I said in my previous  HMS blog, I have had symptoms since the age of 14 and so partial dislocation, joint pain, clicky joints and fidgeting are kind of normal for me. The realisation that the fidgeting hits 10 minutes before my body shuts down at night is a new thing though. Does anyone else with the combo of HMS and ME/CFS notice this? Or maybe you 'just' have ME/CFS and get this symptom too? Let me know please.

Recently, I have found myself doubled over in my chair, chin resting on my hands just to keep my head up, to watch the last 10 minutes of a TV programme. I am usually wriggling slightly and trying to crack my back to stop the weird shivering sensation going up and down my spine. Although I have barely any energy left I am having to squirm and shift in my seat to overcome the discomfort in my spine. I'm wondering if there could be an element of Orthostatic Intolerance thrown in too as I simply lose the ability to keep my spine straight and vertical by 9.50pm!

Joint-wise, my HMS has eased but I still have joint pain during cold weather and my right shoulder is still prone to partial dislocation. I find it odd that HMS has been replaced by ME/CFS in my health priority list, but there are a few remaining symptoms that I am so used to experiencing they don't register with me anymore. These same symptoms would ordinarily warrant attention by anyone else as an illness in their own right.

I remember, before getting side-swiped by ME nearly 12 years ago, I lived in a student house and friends used to come over and watch movies in my room. I used to always have to get up and move around during the film as the weird shivering sensation in my spine was too strong to ignore. I would often get 'For god sake sit still!. Sorry!

Just to throw a really bizarre idea into the mix. I wonder if my shivery spine back in my 20s was a sign that my M.E was dormant? I had M.E (undiagnosed) in my teenage years and it flared up again when I turned 30. I do wonder if there had been indicators that I just didn't pay attention to during my late teens-twenties. I have vague recollections of being so tired after climbing the hill up to my flat that I slept the second I got home. At the time, I was a lot heavier than I am now and put it down to being unfit but.....what if?! It's all hypothetical, I'll never know the answer. 

I'd be very interested to know if there is a link between my body shutting down ready for bedtime and the shivery spine thing flaring up. Thoughts?

Love

Sally (and Foggy OBVIOUSLY)
xxx

Weight and M.E

Hi,

This is an issue that has bugged me for years - how do people with M.E lose weight? Now I'm not talking about people with severe M.E who are often drastically under-weight because of the condition. This blog relates more to mild/moderate sufferers.

I went to an M.E conference a few years ago and heard an M.E charity dietician say that the illness itself does not cause weight gain. What causes the weight gain is lack of activity (not really a surprise) and comfort eating. Both of which apply to me.

When I used to work full time whilst having M.E, the activity involved with being on my feet all day kept my weight down at a fairly reasonable level and luckily I was also going through periods of 'remission' and could walk miles, go to the gym or go swimming whilst my symptoms were allowing it.

However, I haven't had one of those periods of remission for a few years now, and since becoming self-employed I find that some days I do very little activity. My world revolves around one desk and one desk chair in my living room. I'm finding that when I do venture out for a walk I get breathless quickly. Yes, that could be the M.E itself but personally, I do think there could also be a little bit of deconditioning going on. Simply because my lifestyle has changed so much over the past 2 years. So, when I feel able to, when my symptoms allow it, I am

getting back into the habit of leaving the house for a 20-minute walk. I just think, if Patch was still around I would still be taking him out every day so I want to try to get back to that level of activity. If my symptoms allow it. Have no fear - if the exercise makes my symptoms worse, I will stop. I am absolutely, in no way whatsoever, encouraging M.E sufferers to exercise. GET/PACE proved that exercise exacerbates our symptoms, which is why so many of us avoid it in the first place. However, I am going to see how much activity I can do without repercussion and only on days when my symptoms allow it.

I have said for many years that my bum is the size of Alaska. Unfortunately, now the years and weight have piled on, it is now the size of a small continent. I feel flabby, my clothes feel tight and I have lost all muscle tone that I ever managed to achieve (hint: not a lot!). I am hoping a bit of gentle walking will help get back to Alaskan-size proportions over time! Unfortunately for me, my weight gain is there for all to see on my YouTube videos. I think I must have put on a dress size since Foggy started back in 2014. I'm aiming to get back to the same as I was when Foggy started. I don't do scales, I simply go by how my clothes fit. Only yesterday, one of my close friends said that dieting is easy. Simply burn off more calories than you eat. Sounds simple enough but what if you can't do exercise? What about when you can't 'burn off' many calories? Should we exist off a 500 calorie diet?!

As for comfort eating, I think only sufferers with wills of iron can hand-on-heart say they don't eat when going through 'payback' and it feels like you are alone with this dreadful illness. I admit I am a comfort eater. I am really good at eating 3 healthy meals every day. I can't eat processed rubbish because more often than not it has gluten or dairy in it, both of which I am intolerant to. I eat from a small dinner plate (has anyone actually shopped around for small dinner plates recently? I have! It took weeks to find one that was 1970's portion size!! Plates are huge now...adding to the obesity epidemic?? I think so!). I think I am putting on weight for 2 food reasons:

1. I snack. Or at least I used to until a month ago. I am now snacking around 10% of what I used to, hopefully that will make a difference.
2. Gluten-free food is full of sugar and other rubbish to make up for the lack of gluten. So when I have gone to a business event, day out, or trip to the hospital, the only food available is full of sugar and calories. Anyone else had the predicament of being on a diet but the only gluten-free option on an extensive menu is a bowl of chips? (Even then some chips have a coating on them).

Yes, research has shown that M.E bodies don't create/use energy in the same way that 'normal' bodies do. Perhaps that is linked in some way to why it is so hard to lose weight. However, I am going to do as much as I can do to turn the tide. I don't do extreme diets, I like to keep things simple as there is a higher chance of sticking to it! I am also trying to be as sugar-free as possible - wish me luck with that! Some of Foggy's Followers call me Wonder Woman...I think I'm going to have to borrow Superman's willpower of steel!

Love Sally
and Foggy (OBVIOUSLY)
xxx

Brain Inflammation

Hi,

Foggy is still winging his way to Melbourne to see the Emerge Australia gang (9 days and counting....eek). I'm making the most of the peace and quiet and, in slow time, getting ready for our M.E Awareness Week events next week (full info on mefoggydog.org). The week so far has been very busy and has involved lots of communicating online mostly via my smart phone. That is the inspiration for this blog!

If M.E could be summed up in one sentence I think it would be brain and spinal cord inflammation.  That kind of hints that everything related to the brain and spinal cord is affected by the illness. That's a heck of a lot of other body systems and parts that are dragged along for the ride.

Yesterday, my brain felt like it was very inflamed and swelling up to burst out of my skull! I realise that wasn't actually happening but this was how it felt. I felt as if every part of my brain had puffed up and was squished against hard bone, oozing out between the cracks and causing me to feel like I couldn't get a thought out. It's a very hard to describe feeling, it's a kind of numbness of thought

process.

I find the act of checking Twitter, email, Facebook, Instagram, blog comments throughout each day incredibly tiring. But, that is the nature of my Foggy work so I am not complaining. The immediacy (is that a word??) of using a smartphone to check these channels means I feel like I am 'switched on' for about 12 hours a day. Even when I am 'resting' my phone will be pinging and vibrating next to me. Last week, I turned my phone off at 6pm (that never happens) and didn't turn it on until 7am the next day. WOW, that felt good! I could turn off completely without distraction. The downside? I had 47 messages to catch up with whether they were tweets, Facebook messages or emails received. This is why I don't 'turn off' regularly, because I am in demand 👊  Which is absolutely wonderful, I am very happy to talk to any Foggy Followers or people who want to get involved with our cause, but it does take its toll every once in a while.

Let's talk cognitive impairment. I can always tell when I am reaching my limit in terms of brain function as I have typos in every single word I type on my smartphone. It is so frustrating! If I have to type a long wordy reply, I often have to say that I'll reply on my laptop the following day. My hand/ eye co-ordination is rubbish when  my body starts to shut down so typing by touching my finger to a touchscreen is virtually impossible without typos. My brain slightly misjudges where each button is.  The one word I ALWAYS mistype is have. I always type ahve. I have done since I became an M.E person. Do you have one word that you always mis-type? I've probably posted blogs with the odd ahve typo (that was deliberate ha!).

The actual physical act of holding a smartphone is also tiring, do you agree? Having to use arm muscles to hold it 2 ft from my face uses energy too. Sometimes, when I am resting, I try to lay my phone on the bed next to me so I don't have to hold the phone but then I have to kind of prop myself up to be able to type....   This tiny act of typing on a phone is a minefield isn't it?! Business friends of mine have suggested I do my work on a tablet.....NO! At least a laptop has keys and reduces the risk of typos!

I like to give full answers when I respond to a query, sometimes I may have typed 4-5 sentences on my phone but have to give up because I'm not getting anywhere fast! Sometimes, I have the energy to go back and retype words but other times I just figure that the reader would be able to guess what I meant! This frustration also makes me grouchy so I would like to apologise to anyone I am grouchy with because of having an overgrown brain and poor hand/eye co-ordination!

Love 

Sally
(and Foggy OBVIOUSLY)
xxxx

Hopes and Dreams

Hi,

Foggy is on his way to Melbourne to meet up with the Emerge Australia gang. He can't wait to see the lovely people who help so many of the ME Community in Australia. While he is away from Foggy HQ, I am busy organising events, doing promotion, and the usual awesome Foggy stuff that he gets me to do ;)

You would think that the success of ME Foggy Dog would make me happy, you may be surprised to learn that I have got a very low mood today. There are a few reasons for this:

• I have many hopes and dreams for ME Foggy Dog, my brain gets excited and makes plans but my M.E weary body puts its foot down and forces me to stop. I have been having a few meetings with talented business people this week and have been swept away by their enthusiasm and support. There will be changes in the future but I have to keep reminding myself that support and encouragement will not help at the coalface.  It comes down to just my ME brain and hands to do the work. My own insecurities are holding me back, I think, and I end up beating myself up for having insecurities! Doh.
• I had to fill in a few HMRC income forms today. I realised that, because I can't work many hours per week (up to 25 hrs), my income for 2017/18 was abysmal. I am not on disability benefit but do get a disability top up with working tax credits. I get very frustrated that I can't work as hard as I would like. I meet business people who can work 60 hr weeks and their bank accounts reflect that. I work as hard as I can (with rest breaks) but just can't seem to get my head above water. I am very good at what I do but don't have the energy or brain power to network regularly/meet fellow business people. I have put so much effort into my business, I have a few plans for the future, but it would be a shame if it had to close. I kind of feel like I don't have a choice about being self-employed. I personally don't feel I am sick enough to qualify for PIP because I CAN work a limited number of hours. If I'm not on benefits and I can't do paid employment because the hours don't suit my fluctuations then self-employment is the only option....and if that isn't working out......I'm stuck.
  

Having M.E does not stop sufferers still wanting to push themselves and have achievements in life. I wish it did, I wish I didn't want to succeed in life. In the same way that having a disability doesn't mean I like wearing beige, listening to Sad FM and knitting (sorry if you are a knitter! I couldn't think of anything that is considered boring), I think once you become 'disabled' people just assume that that's it. You've become a disabled person, once you have that label it is assumed that your ambition has gone too.. There are so many M.E people following Foggy who have a wealth of skills and talents that are going to waste. I've talked to so many people who's passion and zest for life has been dimmed but not extinguished. They live in hope that they will be able to return to their passion, whatever that may be. I hope that they do get there again one day.

I've said this before in previous blogs, I feel like a failure most days. This is due to a combo of PTSD, anxiety, having M.E and being a 'not fit for purpose' people-pleaser (I often fail in pleasing people because I don't have the energy!).  At least once a fortnight, someone tells me that I am strong. That I can cope with anything. Sorry to shatter the illusion but it's all an act. It's a case of making the best of a bad situation. The act is exhausting. 

Love

Sally xxx

(and Foggy OBVIOUSLY)

Work with M.E....Next Chapter

Hi!

I wrote a blog about M.E and work way back in 2014 when I was in full-time employment Work blog. How times have changed! At the time, I couldn't be 100% truthful as to the full extent of my inability to do this library job as I didn't want to lose my job! I left that job due to 'working relationships' (read into that what you will) but with hindsight, I doubt I could have kept up full-time working for much longer, so leaving 2 years ago was a really good move for me.

So, now I am the proud owner of Words Angel (UPDATE  -Business closed in Sept 2018 to concentrate on Stripy Lightbulb), a small business that does social media marketing and proofreading. Two things I can do from the comfort of my own home, and most importantly, to my own schedule. On average I work 20 hours per week but these hours are split into chunks across the week. For example, I might wake up early and do an hours' work between 6-7 am, rest for a bit and have breakfast, do another hour 9-10 am, take a rest break and do some mindfulness. I'll then fit another hour in before lunch. I'll rest for a couple of hours after lunch (usually watching the Ellen Show....she brightens my day). I might do an hour in the evening to finish off a

project....but that's how I do 4 hours of work per day. 

This type of working would not be possible if I was employed part-time to do the same amount of hours for another business. Inflexible set hours wouldn't work for me as working patterns tend to come in blocks of 3-4 hours. My weary M.E brain and body can't do fixed chunks like that. Work, rest, work, rest, work, rest, work is how I roll.

I was recently having coffee with a business friend, I was moaning about my lack of money and that my business is still building. He asked why I couldn't find myself a small part-time job to keep money coming in. I said to him that as much as I'd love that, it's just not possible. M.E fluctuates. I have no idea when I am going to be feeling so poorly I can't function. Our M.E bodies force us to cancel plans regularly, that includes having to take sick days when our symptoms have flared. I had so many warnings from Occupational Health about my level of sickness it became a constant stress that I didn't need.

2 years ago, I was terrified of admitting that I wasn't able to work full-time. I didn't want to be defined by my health. I still had hopes, ambitions, and drive. Unfortunately, I job hunted for 6 months initially without success. Despite being a postgraduate and having decades of experience, no one would employ me. So, I took my situation firmly into my own hands and became a sole trader with my own business. I remember reading a 'Building a business for Dummies' type book for hints and tips. On the first page, it said that if you weren't in the best of health you shouldn't bother trying to set up your own business as it takes hard graft and a lot of working hours per week (the book said 60+ hours). This is true. However, I have met a lot of disabled people who find self-employment is the only option. I don't want to build a huge digital marketing agency, I'm happy as long as I pay bills and have some disposable income. I'm constantly having to rein myself in as having M.E doesn't stop me being ambitious! However, 12 years into this M.E hell and I am learning to accept my limitations. I was beating myself up yesterday whilst chatting with a friend, she stopped me and said '...but you're DOING it!'. Yes - I am.

I'll never forget my former boss taking me into her office and saying 'I'm worried that you are living to work at the moment'. That was 6 months before I resigned, she was so right. I was resting all the time I wasn't at work to make sure I able do my job effectively. That's not a lifestyle worth having.

I wonder how many of Foggy's Followers are in a similar situation to the one I was in 2 years ago. I wouldn't be surprised to find it's a common problem for mild sufferers.

Love,

Sally xxx
and Foggy (OBVIOUSLY)

Choices

Hi,

Foggy is snoring softly next to me in Foggy HQ so I thought I'd make the most of the peace and quiet and write a blog about the choices M.E sufferers make to make the most of the little energy they have.

People living with M.E have limited energy; our energy can be represented by a non-rechargable battery. We only have a certain amount of energy each day and we have to make sure our battery doesn't go flat before bedtime. This means we are very good at micro-managing our time and activities. We have to make choices. What is worth spending our valuable energy on?

I regularly have to make decisions like whether drying my hair or meeting a business friend for coffee is more important. Which activity holds the most value for me personally? In this scenario,

meeting the business friend is more important, but is the interaction damaged by turning up with wet hair? With a new acquaintance it might be, but most of my business friends know about my M.E life and are understanding. Unless you have limited energy you will not understand how exhausting blow-drying long hair can be. I have thick hair that holds lots of water! It takes around 15 minutes to dry. That's 15 minutes of holding both arms above my head shaking a hairdryer and pulling/twisting brushes. It's exhausting! Fortunately for me, my hair 'hangs' well so I can just wash and go! It takes hours to dry naturally though so sometimes the need for a blow-dry is unavoidable.

I sometimes have to cancel plans with friends because I know I simply won't have any energy left at the time I am due to meet them. It used to feel odd to me, cancelling BEFORE I felt too ill to go out. However, I'm now an old pro after having M.E for 11 years and prefer to not leave the inevitable cancellation until the last minute. It's not fair on my fabulous and caring friends, I find that plenty of warning helps the situation be a bit more tolerable.

Anyone who hasn't heard of the Spoon Theory - read this. The Spoon Theory This excellent way of describing how we manage our energy levels if we have a chronic illness has been adopted by millions of people worldwide.  I personally don't, but many call themselves 'spoonies'. We lose energy every time we undertake an activity whether that is washing up, climbing stairs, getting out of bed, showering, cooking dinner, writing a blog......  All of these activities mount up and we find our battery is on the verge of being flat very quickly if we don't learn to say no or make wise choices.

Saying no is blooming difficult, I am a people pleaser so will always push myself to do more than I should. I have learned over time to say no more, but I have met with resistance from some quarters. This resistance is understandable I suppose, these lucky people don't have the energy of a washed out rag and remember, we don't look sick. Rest assured though....we FEEL sick....very sick, every day. Understanding and consideration goes a long way if we have just cancelled our plans with you or can't do a favour/job for you. It won't have been a decision we have taken lightly. Unfortunately, we know our need to save energy is far, far greater than pleasing our friends and loved ones. Sorry!

Love,

Sally (and Foggy OBVIOUSLY)

Apology

Hi,

It occurred to me this morning that I have been neglectful of Foggy's Followers and I am really sorry about that. There are a couple of reasons for this -

• I have an appalling memory (surprise!)
• As Foggy has grown there are soooo many people to keep on my radar it is virtually impossible.

I have to remember names, how I know you, where I know you from, what country you live in, your time zone and whether you are a sufferer, linked to an organisation who can help the ME community, or an interested member of the public (my favourite type of 'normal' people).

It's not really a surprise that I can't regularly keep up with you all. On top of that, there are the people who aren't on social media but follow the blog site or website, or local M.E support groups who have contacted me about attending meetings. I also lose track of people who have emailed months ago and then gone off my radar.

So, I would like to take the opportunity to tell everyone who has taken an interest in Foggy since July 2014 that I value your support, input, and interest. Whether you have been a 'Foggy-sitter', attended one of my events, spread Foggy love with merchandise, donated, taken an interest in ME Foggy Dog on social media, or engaged in other ways.

Feel free to give me a nudge/reminder/shout any time!

Thank you.

Sally xxx