Stress

Hello,

I have insomnia and am hijacking Foggy's blog again...sorry Foggy!

Stress is one of my biggest triggers and I know I am not alone in saying that. The symptom Post Exertion Malaise doesn't just mean the after effects of physical exercise, it can also include anything that makes your body move internally. This can include increased heart rate due to stress, breathing issues due to anxiety, etc.

At the current time I am in the middle of a long period of exceptionally high personal/work stress and it is having a severe effect on my M.E. health. It doesn't seem to matter what steps I take to cope with my stress levels, my M.E. is taking a hit every day. Let me assure you, it has absolutely nothing to do with the Foggy campaign; I don't find Foggy stressful. I am a little upset that the timing of the stress is taking the shine off of Foggy's last 20ish days but that can't be helped. I hope I am still managing to do a good job regardless of my own personal pressure.

I am not very good at biology; I will attempt to explain what happens in an M.E. body when it is stressed! I'll talk about reactions to stress in relation to my own experience. So, my body is in hyperdrive all the time...something to do with the adrenal gland always being in the fight or flight response (My body thinks that a big scary tiger is coming after me ALL THE TIME and braces itself to run away!) this adds to my tiredness. So, of course, when stress hits it goes even further into overdrive. In the past week I have had to cope with chest pains, worse than usual extreme fatigue, dead legs, cognitive impairment, hypersensitivity to light, brain fog and slurred speech. In the immediate aftermath of stressors, my face gets exceptionally hot, my throat becomes tight and I get breathless. My body uses all of it's energy reserves trying to control this reaction. I had to leave work early twice this week, because my body had used all of it's energy reserves, battling against my reactions to stress.

This photo shows what I looked like yesterday afternoon AFTER a 3 hour sleep, in a darkened room, when I got home from work. I was sat (very quietly and slowly) chatting to my mum, She said I looked so dreadful she wanted to take a photo to show you all what I look like when my M.E. wipes me out. I don't think it has ever been possible to capture M.E. in a photograph; I/we just look like we have been dragged through a hedge backwards and like we have had a bad night's sleep. I am prepared to upload a really unflattering photo of myself to raise awareness though!

Of course, I am practicing what I preach. I have been using mindfulness to control my stress levels and have been resting a lot in the evenings. However, additional stress is being added daily and so I am struggling. I think non sufferers forget, we aren't just coping with our M.E. we also lead 'normal' lives and have the same day to day stresses that they have. Just because we are ill doesn't mean our worlds have stopped spinning.

Anyway, I hope you are enjoying Foggy's last 20ish days. if you haven't donated yet please do, every penny counts towards funding much needed M.E. research.

Love

Sally xxxx

Time to give myself a break and stop hitting myself with a big stick!

Hello,

I'm sure I am not the only person out there who keeps hold of mementos and items of random stuff that hold lots of great and emotive memories. This blog is about how I have been using some of mine negatively (without meaning to), and they are a constant reminder of what could have been if I hadn't got M.E.

Since 2008 I have had a huge plastic crate on the top of my wardrobe at the foot of my bed, full to the brim with university lecture notes, handouts, assignments, official letters and marked essays. Originally, I kept it all because I thought some of it may have been useful in future employment,as a refresher, but also as a nice reminder of great times. However, it has now turned into a constant reminder of how it all went wrong. 

When I graduated from my postgraduate degree in 2008 I believed I had the world at my feet. I applied, and was accepted, to do a Phd at an excellent university at the other end of the country. A couple of months later the symptoms started and those plans had to be shelved. I'll admit to feelings of bitterness; I am now squillions of pounds in education debt and am employed in a job where no degree is required. I have not used any of the skills I acquired in an employment capacity; that makes me very cross. 

I think that Foggy has allowed me to show that M.E. hasn't destroyed all of my brain cells and I am more than capable of creating and organising a large, international, fundraising campaign. It is poles apart my from my university studies; Transnational Europe, Democratisation of Russia and 20th Century American Literature anyone?! My postgraduate degree involved a specialism in Russian politics...100% nothing to do with my life NOW. I have realised that although I am not in the role I yearned for back in 2008 I have a new path that I revel in. I have academic friends who tell me I would make a fantastic lecturer as I have excellent communication skills and people find it very easy to engage with me. I agree; however, there is much more to that type of role that my M.E. will not allow me to do. The 60 hour weeks and shedloads of paperwork to name just two aspects I couldn't cope with. Yes, I could deliver a lecture but would I be able to remember it one week on? Probably not.

Now I have realised that academia is no longer where my life is headed, I have made a conscious decision to offload some of that negativity. Today, I emptied 'the crate'. I can't bring myself to throw away marked essays....after all that's ME...I wrote those (gold star for me) and when I am 90 I can look back and be proud of myself. But the rest, all of the paperwork kept for 'just in case my M.E. ever goes' has gone. 

I have absolutely no idea what my future holds; will my M.E. suddenly vanish, like it did in my teens? Or am I destined to live, restricted, for the rest of my life? Either way, by getting rid of reminders of what could have been, I am finally giving myself a break! I can stop wondering what my life COULD have been and find a new M.E. adjusted path.

Sally x

'Payback' or Post Exertion Malaise

Hello!

Well, there are 36 days left!! So much has happened in the past 11 months, Foggy (and Sally's) heads are spinning in the whirlwind! Foggy starts the long trek back from the Philippines now; he'll soon be back in the UK. In the meantime Sally has written a blog for you all to read.

Hi,

This blog is about something every M.E. sufferer will be able to relate to. We call it 'Payback' but doctors call it post-exertion malaise. Essentially, it's when the body pays you back/tells you off/chastises you for doing something even remotely interesting or out of your usual routine. Any additional exertion sends M.E. affected bodies into hyperdrive and causes all consuming flare ups of symptoms.

I can usually predict when my payback will come and occasionally take time off work to allow for it. It's a waste of holiday time but makes my life so much easier to cope with. PJ day anyone?! My own personal payback occurs 2 days after any event. This is a pain! If I have an enjoyable Saturday I will ALWAYS be feeling dreadful on the Monday...in work. Now, I'm not talking about partying until 3 am, going to the gym or spending the whole day shopping with friends. The 'event' could be something as basic as spending a little too long out grocery shopping or visiting family and sitting/chatting in their living room.

To demonstrate what I mean I will talk about yesterday and today. It is a busy week for my family as my mum retires on Friday, and we have a number of parties and presentations to go to. Yesterday was the first of them. So, I worked in the morning and made my way to where my mum's presentation was being held. Mingling was required, which of course means standing up. I was stood up for around and hour and a half. At the time I didn't feel unwell; probably because I was enjoying myself! After everyone had left we made our way to a bar and enjoyed a few lovely cocktails before enjoying a celebratory meal. Half way through the meal I began to feel my energy slipping away. The best way to explain this feeling to a non sufferer is to say that it felt as if the plug had been taken out of my energy sink and the energy drained away down the plughole. We went home and within 5 minutes I was in my pj's, chilling out in front of the TV. I was laying on my bed by 8pm and shivering very badly, so much so my teeth were chattering. I was asleep by 10 - hardly a late night. 

I was expecting to feel fine today, as I have already said, my payback usually occurs day 2 post exertion. However, today, I felt tired as soon as I woke up and went downhill from there (doesn't bode well for tomorrow!!). I have had dead legs, brain fog, slurred speech, sore throat, flu symptoms and overwhelming tiredness all day, the severity was at least 3 times my usual daily level. For once, someone commented on my M.E. today. They told me I looked like **** and said they could tell I was feeling poorly. It was actually nice for someone to notice! I feel as if I have dragged myself from A-Z today. I have also been feeling sorry for myself; par for the course unfortunately. I want to be able to live my life and M.E. is stopping me from doing that to the best of my ability. Unfortunately, the next 5 weeks is going to be full of various events and 'payback' is going to be horrible....just means I have to make sure the 'event' is definitely worth feeling ill for! Oh the pressure!

Love,

Sally xx

Mindfulness

Hello!

Foggy is STILL in the Philippines (3 week long trip!), so I am going to write another blog while we wait for him to set his paws back down in the UK....he's given his permission of course ;)

Last week I attended a M.E. awareness talk in Burgess Hill run by ReMEmber. One of the speakers, Dr Clare McDermott (University of Southampton researcher), has studied severe M.E. She is also a recovered severe M.E. sufferer. When asked by a member of the audience how she had got better she couldn't put it down to any one thing. However, she did say that mindfulness played a large part in her recovery. A few people in the audience made negative comments (namby pamby, wishy washy etc)  and asked if it

was available on the NHS. 

I used to run my own holistic therapy business (it closed about a week before Foggy started, so not long ago). I used to encourage my clients to do mindfulness if they needed help with stress or to cope with a busy lifestyle. It is not namby pamby or wishy washy. It is simply giving your brain and body time to slow down and recharge. It's quality 'me' time for however long you choose to sit. Concentrating on breathing is exceptionally calming, all other thoughts vanish. Modern life involves trying to do as many things in as little time as possible and so our bodies are constantly on the go. Watching telly, keeping an eye on kids/pets/partners, tweeting; all at the same time - ring any bells?!

With M.E., regular rest breaks are always advised to give your body time to slow down and recharge. Mindfulness is similar to Pacing in that it is time away from the world to just 'be'. It is used in yoga but it doesn't have to be yoga-based. Personally, I first got into mindfulness through regular one to one Yoga sessions; unfortunately, these were not cheap and so I had to stop after around 6 sessions.

My Yoga teacher recommended  that I download some meditations from the internet onto my laptop and phone so I could just plug in headphones and relax whenever needed. So, that's what I did for around 6 months. Unfortunately, I got out of the habit.

I am currently going through a period of intense stress (not Foggy related) and have been struggling both with stress levels and a M.E. flare up (funny that they both struck at the same time! NOT). So, thanks to Dr McDermott talking about it, I have returned to mindfulness; I have felt my stress levels reduce dramatically and my M.E. has calmed down again. So, it clearly works for me. I would thoroughly recommend it to anyone, ME sufferer or not. There are websites offering free meditation...I have added the link to the one I use below. The 12 minute meditation is great; I challenge anyone to do it and not completely zone out!

http://marc.ucla.edu/body.cfm?id=22  - Check out this link

Love,

Sally xx

Temperature

Hello!!

*Foggy* Can you see me? I'm in Thailand!

I haven't written about symptoms for a while so this blog will be about the inability to regulate body temperature. Fortunately, I can use today as an example to highlight how tricky it can be. Today I attended a 4 hour staff training event. It was informative and enjoyable; however, the building it was held in is old and very cold inside (because of it being the summer months, the heating wasn't on). The first lecture theatre was so cold I started shivering after around 30 minutes. I wasn't the only person affected but because of my M.E. I felt the impact of the cold much more intensively. My legs were shivering and my whole body felt like a slab of ice. I was starting to lose sensation in my legs as my body seemed to go numb to cope. We were in this room for 2 hours and at the 2 hour point I was very grateful for the cup of hot water (notice not coffee - my body hates coffee). Moving around for 15 minutes warmed me up slightly, but the next room was just as cold. Another 2 hours in this room and my body felt like it was turning to icy vapour. After the event I struggled to get warm. My face/head felt incredibly hot but my body was numb with cold. It took me a good hour to warm up.

With M.E., because your body uses so much energy trying to warm up/cool down, often ineffectively, other symptoms flare up in response. I have felt exhausted and brain fogged all afternoon, because of the energy used trying to be a non-icicle. On the flip side, excess heat can feel overwhelming. If, for example, I am in a hot car, I feel stifled very easily. I feel like I can't breathe and often have to resort to deep breathing to cope. Guaranteed way to annoy your fellow passengers - open a window so they get a cool blast when I have to cool down!! Let me clarify, I am not talking about sauna hot, for a non sufferer it would probably feel pleasantly warm. My body reacts as if it is overheating and goes into overdrive to cool down.

As I said in my awareness talk on 12th May, inability to control temperature is one of my own personal issues that I have to deal with on a daily basis. I usually feel hot through the day and then by bedtime I am shivering, this is the same EVERY NIGHT, regardless of season. To warm up enough to get to sleep I wear thermal pj's, thermal socks and have to sleep under 2 duvets. I have to do that or I will just lay in bed shivering unable to drift off to sleep. I remember when I was on holiday in Malta last year,  requesting extra blankets for my room. I think they thought I was nuts! It was, on average, 15 degrees centigrade at night and every room had air conditioning/heating...I don't think they understood how my every need wasn't being met!

As every sufferer knows...layered clothing is the only way forward....on, off, on, off!!

Love,

Sally xx