Dizzy

Hi,

I have a new piece of furniture in my bedroom and it has been the perfect excuse for a de-clutter. So, yesterday I, in half hour bursts of energy, threw stuff away and sorted old books. I came across my 2008 diary. My M.E symptoms began in 2008 and it makes for an interesting read! I'd forgotten a lot of things that happened. That diary is the inspiration for this blog post.

I have been suffering from Labyrinthitis/Vertigo for the past 9 weeks. This is exactly how my M.E symptoms began in 2008 (Labyrinthitis-Vertigo-permanent migraines). I will be going to my GP

next week to ask for new medication. Lessons learned from last time around should hopefully prevent months/years of tests and specialist appointments. Last time it took 2 years to be diagnosed with permanent migraines. Migraines are a symptom of M.E. All of my symptoms were improved with the beta-blocker Propranolol. I am hoping that my GP will be able to look at my medical notes and find the letter from the neurologist saying if I have these symptoms in future to prescribe me Propranolol. I really hope I don't have to start back at square one with new tests.

This is an extract from my diary - Tuesday 1st January 2008

2007 has definitely been one of my worst ever years despite getting my masters. This illness is making my life drain away and it doesn't feel like I have much left. 13 months of misery is too much to bear without being diagnosed. It feels as if I've lost most of my friends because I can't put the time/energy into those friendships, it now grates every time I have to decline invitations due to my health. I just want to be diagnosed in order to be able to control my symptoms and subsequently my life.

This was around 2 years before my M.E diagnosis. Little did I know that even a diagnosis wouldn't give me control. M.E is like a blob of jelly, it constantly changes shape and fluctuates minute by minute, it is very much an uncontrollable illness.

Extract - Monday 17th March

Had a bad attack last night. Thank god I wasn't at work. Yet again it started with crunching in my ear, then the room started spinning. I wasn't sick even though I got mum to get me a bucket. Lasted a couple of hours this time. Couldn't stop crying. Sick of being ill. Why can't I just get on with my ****ing life?! Got specialist on Thursday, praying he can help before I lose my mind. Off sick for the next couple of days as I feel washed out and ear still crunching.

At this point I hadn't been diagnosed with permanent migraines. Touch wood, I haven't had a migraine for about 5 years. I get all sensory migraines that affect EVERYTHING. I can't stand, my vision is like a kaleidoscope, I lose my hearing, I can't smell anything and I have diarrhoea and vomiting all at the same time. These symptoms start and reach their peak within 30 seconds of starting. It's a very scary experience. My body just seems to implode. I am very fortunate that my migraines have only happened in the evenings when I am at home. I lived in permanent dread that I would be out in public when an attack occurred. CBT helped to manage my anxiety and fear of collapsing in public. Which is why now, in 2016, I am hoping I can nip my dizziness in the bud before a full migraine happens.At the moment I have dizziness, nausea and a crunching sensation in my left ear. Exactly the same as in 2008 at the beginning of having symptoms.

I am so glad that I used to sporadically write in a diary. My memory issues mean I forget the advice, medication and diagnosis given by doctors. I am hoping if I take my diary with me I can show my GP that my current health is just history repeating itself.

Love,

Sally
xx

Banks and businesses

Hi,

I have made a rare trip out of my house this morning to get some admin done. My dad (thanks Dad - I still can't drive because of dizziness) drove me into town and I went into my bank branch for an appointment. The woman in front of me had a walking stick, she was told to go into the waiting area next door and the person she was due to see would come and get her in a moment. I was given the same advice when it was my turn.

The woman with the walking stick was taken through a side door on the ground floor. I was met by a lovely member of staff who said we would be going to a room upstairs. I didn't really think anything of it until we reached the third flight without stopping. There were 4 flights of stairs to be climbed before reaching our meetings room.

My M.E advocacy head kicked in and I couldn't help myself. I said 'What would you say if I told you I have an invisible disability?' He looked confused. 'Just because I don't have a walking stick doesn't mean I have no issue climbing stairs'. I asked him what would have happened if I had been in a wheelchair. This is when I found out about the meetings room on the ground floor. Apparently, if bank

staff had known (i.e. seen) my disability or mobility issue then a ground floor meetings room would have been used. I didn't want him to think I was being deliberately argumentative so I explained about being an M.E advocate and suggested maybe in future staff could ask if there was a reason a client can't be taken upstairs for appointments. He said there used to be a lift but it broke down and was never fixed due to financial constraints. I received excellent customer service during the appointment and was happy with the treatment received....once I was upstairs!

I have spoken in public before about how businesses should turn accessibility for people suffering from invisible illnesses into their USP (Unique Selling Point). Publicise that you understand not all disabilities are visible and that additional assistance is available. Help should be discreet and available quickly and easily. At a library staff training event, I suggested putting chairs at the reception desk for those people who cannot stand for long periods of time. There are many subtle tweaks that can be made in customer service environments to help people with invisible illnesses. Businesses just need to be educated on how they can help. The library I spoke at adopted one of my ideas and gave me positive feedback on the results a few months later. They promoted the idea of 'Can we help you save a spoon?'. Students with chronic illnesses knew what that meant and could discreetly, and with minimum fuss, get the help they needed.

SO many people in society nowadays have chronic illnesses, it's time businesses and customer facing establishments wake up to that and give us the help we need.

Love,

Sally
xxx

Love Life

Hello!

I've told Sally to be brave and write this blog. She has just read this Chronic illness blog post and I want her to tell her story of dating with M.E. So here goes....

Hi,

I never dreamed that I would be nearly 40 and still single. Like much of the single population, I have to resort to internet dating. My friends don't have any single friends they can introduce me to. I am now finding that a lot of people my age are newly separated and come with baggage in the form of children, fraught divorce proceedings or horrible ex's that just like to cause trouble

(women can be nasty can't they?!). Men are usually flabbergasted when I say I am single, never been married and don't have/want children.  I have my own baggage...it's called Myalgic Encephalomyelitis. Unfortunately, I was single when I was first diagnosed. I didn't have someone who was already in love with me who would be there through thick and thin (I know this isn't always the case but there is an added sense of security). 


Like the woman in the blog mentioned above, I am always upfront about my M.E on a first date. I don't go into minute detail but I go into just enough for them to realise it is a major part of my life. I usually get 'oh, that's being tired isn't it?' I expect that, that's the common misconception. I usually just say it affects my energy levels and restricts my daily activity. Just so they understand why I may have to cancel dates or go home early. Every man I meet says they 'don't have a problem with it' and aren't put off. In my experience, they take my lead. I take my advocacy hat off on dates and don't like to ram facts down their throats! They digest the little bits of information I dole out when situations crop up and try to fit in with my life as best they can.  M.E. has never been the reason for a relationship to end but it has been a factor in the failure of a relationship. Lack of energy is a hindrance when trying to build a lasting relationship.

I have recently ended a 7 month 'thing' with a lovely guy I met on the internet. We dated for a while and then it was on/off/on/off. There were a number of issues that we had to deal with, one of which was the fact he lived an hour away. We compromised and met half way when we met up but even a half hour drive to see him meant I wasn't at my gorgeous and eloquent best!  I started to notice that he wasn't asking questions about my health. I liked that he didn't just see me as a poorly person but was getting increasingly frustrated that he took little interest in that part of my life. I am a M.E advocate and yet I couldn't get 'my man' to take an interest in M.E! He wasn't even remotely interested in Foggy (*Foggy* sob hic). He was the person I did the essay for over Easter weekend (see previous blog post). I pushed myself and subsequently made myself incredibly unwell for someone who said he 'didn't get' my illness. He was puzzled a few weeks later when I said I still had the ear infection. 'Oh, it's THAT bad?' was the response I got when I said I was still dizzy and it was having a knock on effect on my M.E. He couldn't get his head around how his essay could have caused my ill health.

I am still poorly with Labyrinthitis now 7 weeks on and I am no longer in touch with him. I realised that I need someone who has compassion and a willingness to learn. I don't want to only be known as someone who has M.E as my illness does not define me as a person. However, any future 'Sally's other half' has to realise that adjustments need to be made and my symptoms will affect our lives together. I find I am incredibly judgemental on internet dating. I steer clear of anyone who seems to have little or no compassion. I don't want to have to explain my every action and risk being judged.

I am a hopeless romantic but have never had much luck in the romance department. As time goes on, I am starting to hope that I don't become the old spinster who lives down the lane with lots of cats and gin. Having M.E is an obstacle that needs to be overcome in the dating game. Not having energy for a social life is definitely a hindrance, how can single men see me for the catch that I am when I am hidden away in my bedroom resting?

Massive shout out and lots of love to those husbands/wives/partners of M.E sufferers who show compassion and understanding to their other halves. I hope to find my own special someone one of these days!

Love

Sally xx

People Pleaser

Hello,

I am guilty of 'do what I say, not do what I do'. I am always banging on about pacing and taking care of yourselves. However, my actions over the Easter weekend have resulted in 6 weeks of additional illness. Let me explain.

One of my close friends was on a very important course for work and had an incredibly stressful week with presentations and mini essays. I had been providing emotional support but could tell he was reaching his limit. So, when he was told he needed to research and write a 3,000 word essay in 3 days I offered to help. Initially, the help was supposed to be a bit of research, guidance and proofreading. I

was relishing the thought of using my brain again, unemployment is starting to make my brain go slightly mushy. The topic was Russian history - perfect!! Both my BA and MSc dissertations were on the subject of Russian culture and politics and so I threw myself in to help him.

Unfortunately, my friend has no academic experience and no knowledge of Russian history. So, my couple of hours help and support turned into 3 days (the whole Easter weekend) of talking to him on Skype, researching, getting him to explain his own view of the subject and writing the essay all at the same time. SENSORY OVERLOAD!!!!! I SHOULD have stuck to an hour a day and explained my self-enforced limits but I didn't. I pushed myself. I could feel my body and brain wilting but I was enjoying myself! I love history and research, yes I am a nerd, and thoroughly enjoyed every minute. 

My body began to shut down in the following order:
1. Face became hot and flushed
2. Headache
3. Glands became swollen in my throat
4. Sore throat
5. Voice became husky
6. Heart started to race
7. Palpitations
8. Overwhelming need to get horizontal
9. Sense of confusion/disorientation
10.Exhaustion
11.Unable to feel arms and legs fully.

My friend regularly asked if I needed to stop and rest and kept saying he didn't want to make me unwell. I did rest regularly but found it too difficult to turn my brain off and so it wasn't quality rest. Even when we weren't on Skype I was still thinking about the essay and what needed to be done next. I do not blame my friend for making my M.E flare up, my energy management is my own responsibility and I should have paced and said 'NO' when I started to feel heightened symptoms. As the title of this blog suggests, I am a people pleaser. I put other people's needs ahead of my own all the time! This is something I need to start rectifying or my pacing techniques will never work. Pressure from other people causes me to push past my limits daily. Whether that is unpacking groceries, taking Patch for a walk or helping with academic work. I impose limits on my own personal daily activities and when I have no external input my symptoms are manageable, but the second someone asks for something from me my best intentions fly out of the window!

I was fully expecting a couple of days of 'Payback' and that is what I got. However, on day three.....Labyrinthitis hit and I was unable to stand up without falling over. My body was obviously so run down that it became susceptible to infection. Labyrinthitis was the illness that I 100% believe triggered my M.E 10 years ago and so I have been incredibly worried about whether this infection will have a further negative affect on my M.E severity. I have been dizzy, disorientated and nauseous for 6 weeks. As my body has fought the infection my M.E symptoms have also flared up, that is to be expected. I do not know how much longer the ear infection will go on for but.... come on...I have a (M.E. restricted) life to get on with!

I am bitter. In the past 6 weeks I have managed to leave my house maybe 6 times and still can't drive due to disorientation and lack of spatial awareness and job hunting is impossible. However, my friend's life has gone on as normal. He got his mark back - it was an A-  (well done me) and has been on several weekends away, nights out, work activity days since and the 3,000 word essay seems like a very long time ago....to him. People pleasing, in my case at least, is always one sided and I always seem to get the thin end of the wedge.

Love,

Sally 

xxx

'Super-fit'

Hello,

Myalgic Encephalomyelitis affects people in all areas of society. Young, old, rich, poor but also the 'super fit' and those people who would rather poke themselves in the eye with a big stick instead of *gulp* go to a gym!

With his in mind, today's blog will concentrate on previously 'superfit' M.E sufferers.

This week, I stumbled across a YouTube clip from 2015  Life with ME/CFS | Rugby league captain Richie Barnett I loved it! It was a refreshing change to see a positive, matter of fact, uplifting talk from a M.E sufferer. There was no emotive music or powerful words on the screen, just Richie talking honestly about his ongoing M.E experience. I found it profoundly moving. Now, let me make this 100% clear. I would not wish M.E on my worst enemy but have been hoping that someone in the public eye would come forward and talk openly about their symptoms and how M.E affected their life. This YouTube clip is perfect. Richie was an international Rugby League Captain and was known around the world in sporting circles. His life story clearly flies in the face of any theory that only sickly people get struck down by this dreadful illness. This 'super fit', dare I say very attractive ( ;), man was struck down in the prime of life.

I can understand why 'celebrities' would not want to come forward and admit to having M.E. As we all know, there is still a huge stigma with our illness. We are still seen, by some people, as malingerers and idlers. Since starting Foggy, my openness has occasionally bitten me on the bum, particularly now I am in the job market. I have been warned by employment advisors to be careful about declaring my illness on my C.V/job applications as 'we are all aware that overt discrimination exists...'. Sensible advice maybe but when I am openly telling everyone and anyone around the globe about my illness I am 100% opening myself up to discrimination. I can only hope that future employers see me for the skilled and intelligent person that I am and can see past the veil of ill health.

Foggy's eagle-eyed social media followers will have seen that I am looking for ex-military personnel

who have been medically discharged due to ME/CFS. I would like to highlight that these, again 'super fit', men and women are not immune to the illness. I would be interested to hear how the military establishment dealt with the invisible illness and how these sufferers are dealing with civilian life.. I have many military friends who find it extremely difficult to understand M.E. They are used to amputations and bullet wounds which can be overcome with mind over matter.
M.E cannot be overcome by mind over matter.
Some of my military friends have spouses/children/friends with M.E and initially found it hard to understand how you can not 'push through it'.

Personally, I would say M.E sufferers are some of the strongest people on the planet! The daily need for resilience and the level of inner strength required demonstrate that we are not weak, even if our bodies and minds are letting us down.

Love,

Sally (and Foggy.....obviously)
xxxx