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Thursday, 11 January 2018

What's Happening Now?!

Hello,

I wrote this blog in 2016 (was it really that long ago?!) and I seem to be in exactly the same situation. I am recovering from another broken foot/toe and my eyes are playing up AGAIN. My double vision started again 3 months ago, it's sporadic and so I haven't really thought much about it but it's been bugging me today, hence the blog.

As I said in my 2010 blog, the Emergency Eye Department (EED)told me my eye problems were caused by Propranolol and/or my M.E. They said that M.E caused muscles to work slowly and maybe the Propranolol side effect of 'weak muscles' was making the issue more noticeable. I came off the
Propranolol soon after and I noticed that the double vision and related eye problems slowly stopped.

I remember speaking to some Foggy friends about eye problems at Foggy's launch party. They also suffer from issues of double vision and achey eyes. They weren't taking Propranolol. We all said that we had never heard of M.E affecting eye muscles before, it was a definite...eye-opener (sorry!).

I haven't worked out a pattern yet. I'm not sure why I have double vision on some days but not others. It's not specifically when I am extra tired or lethargic. Sometimes it's when I wake up, other times I may have just rested/closed my eyes for a slow blink. I get the same double vision though. I agree with the EED, I think it is caused by weak eye muscles and my eyes are taking longer than they should to focus when I open my eyes.

I wear contact lenses. I used to wear them 24/7 but I had a stupid accident about 14 years ago. It involved a cup of boiling water, a flight of stairs, PJ bottoms being too long, and having severe burns to my entire face, including my eyes (I've said before that I'm ridiculously clumsy...right?!). Subsequently, I have very dry eyes. I have been told I can wear lenses but not for longer than 4 hours at a time. I also tend to stick to glasses as they have tinted lenses. But, on very rare nights out my vanity comes out and the contact lenses come out to play. Anyway, about 3 months ago, I noticed that on one of my eyes, the contact lens no longer fits properly. It doesn't 'stick' as it should. It's as if the shape of my eye has changed, so much so the lens doesn't lay flat against my eyeball. Opticians measure the shape and contour of eyes during contact lens checks and so it's obviously a 'thing'. So, I have booked myself in for an eye test. I have eye conditions in my family history (Glaucoma, Macular Degeneration) and so eye stuff is slightly worrying. It just seems weird that these 2 eye problems have happened at the same time.

I know I always say it but I think this shows that M.E affects every single part of the body! Muscles make stuff move and so it's hardly a surprise!

Love,

Sally
and Foggy (obviously)

Tuesday, 9 January 2018

Change for the Better...Hopefully

Hi,

I am attempting to come off anti-depressants! This will be my fourth attempt in 5 years but I am hoping I will be successful this time. Every time I try, something traumatic or very stressful happens and my mood dips/depression flares significantly.

I have written before about a conversation I had with my GP years ago when he first prescribed a low dose of Fluoxetine. I had noticed that fatigue was a common side effect according to the info leaflet. I was concerned that it would add to my already overwhelming fatigue. He said (paraphrasing) 'What's better? Suicidal thoughts or bit of extra fatigue?' I got his point but still...more fatigue?! I was barely
Smarties!
existing at that point and was only living to work, eat and sleep. 

I have noticed a marked decrease in my energy levels since starting anti-depressants and that is my main reason for wanting to stop taking them. I also think it is a good idea to come off and see if I even need to be on them now. I have been slowly coming off them over the past 6 weeks or so. My plan was to get more sunshine, exercise (we are talking extra 2 minutes a day...not joining a gym!) and to do more mindfulness to reduce anxiety. I am doing as many non-medicinal things as possible to make sure I can stay off tablets. Unfortunately, breaking my toe hasn't helped, if anything, being even more immobile has added to my anxiety. I am hopeful that, once I can get around independently again, my action plan will work!

Anti-depressants helped me through some very bad times (assault, cancer, bereavements, bullying - what doesn't kill you makes you stronger right?!) but I now want to see if I can use alternatives just as effectively. 

Wish me luck!

Sally xx

Monday, 8 January 2018

Another Dentist Related Blog

Hi,

My British Columbian Foggy friend sent me the following info in response to my request for details of how dental work impacts M.E symptoms. Thanks Kristina.

'My experience at the dentist prior to understanding about light and sound sensitivity...
First of all I was exhausted and frazzled when I showed up. I had forgotten my ice pack for my head and pillow for my legs. This might have contributed to my epic meltdown. Also, at this point, I am still unaware of my sensitivities to light and sound.
The hygienist warned me that the descaler is very loud. Again, I had no idea this would be a problem.The cleaning begins... Within minutes I feel my nervous system ramping up. I try to distract myself, do meditative breathing, but nothing is working. I suddenly realize that the dam is about to burst and I signal for her to stop. I am then completely overcome with what can only be described as a severe anxiety attack with significant pain - everywhere, along with cognitive breakdown. I kept trying to explain that it was the sound, but I couldn't stop sobbing for what felt like an eternity. The hygienist finally realized that it was the noise from the descaler that triggered the attack. The entire episode was traumatizing and humiliating.
When I first arrived at the dentist's office I was already having trouble forming thoughts and words properly. By the end of the appointment and my spectacular meltdown, I was being treated like a child or someone deemed unstable. I avoided going back for over a year and a half.
BUT, we did agree that from now on my cleanings would be done manually.
When I finally scheduled another appointment, I arrived with:✔️A pillow for my head plus my ice pack for pain.✔️A pillow for my legs and feet for pain.✔️Very dark sunglasses - the kind that protect from all sides.
While I don't like going back to manual cleanings, there was no pain, no nervous system meltdown, no M.E flareup.
I also had a very important conversation with my dentist. I explained the things going on behind my actions at the last appointment. But, I also said that - based on the conduct they witnessed - I could understand why they responded the way they did. Events that seem normal or mundane can be overwhelming for people with ME. One suggestion I would make would be to include M.E on the patient questionnaire. Or perhaps include a question for chronic conditions in general but with the space to elaborate. Then at least a conversation can happen before something traumatic does.'

I agree with Kristina, there are measures that can be undertaken by dental practices to ensure treatment is as untraumatic as possible. A questionnaire would be a great way to establish if the patient could possibly have light and sound sensitivities. These patients could then be encouraged to bring their own equipment - sunglasses, ear defenders etc. This would also cover people with migraines and other chronic illnesses. Prior knowledge would make the interaction much better for all parties.

Thank you to everyone who responded to my plea for info. It will all be mentioned in my talk at the end of next month.

Love,

Sally x
and Foggy (OBVIOUSLY)


Tuesday, 2 January 2018

Dentist Question - Your Responses

Hi!

So, I asked for help last week and many of you responded with your usual enthusiasm. Thank you.

I received the message below from my M.E friend Ryn (I can't believe that we met through Foggy and have only met in person once....she is a true friend now though xx) . It was much more than I had expected and she has given her permission for me to use it as a blog post.

So, here is Ryn writing about her experience with dentists since her M.E diagnosis.

                    ---------------------------------------------------------

And here I am again, being given the opportunity to clear some more clutter from my headspace.  Thank you Sally & ME Foggy Dog for this golden opportunity.

My dental issues whilst having severe M.E. began four years ago.  It was the year I first became ill with a nasty virus, was then diagnosed with Post Viral Fatigue Syndrome (P.V.F.S) then later, after undergoing various tests at an Infectious Diseases Clinic, received a confirmed diagnosis of Myalgic Encephalomyelitis (M.E). 

Looking back, I was at times truly one of the many ‘lost millions’ of M.E sufferers. Those of us who have or know someone with severe M.E. know our tolerance to movement, sound, light etc. is zero – we can’t cope with ‘normal’ life in any way.  We sleep, we rest, we exist.  We fight constant pain in our muscles & joints, from our head down to our fingertips and toes.  We have inflammation in our glands, our spine and our brain.  Over my four years with M.E I have been totally dependent on my husband for literally everything I need, for months on end but particularly during three serious M.E. relapses.

I was bedridden & sleeping 24/7 for months, relying on my husband to help me to raise my head to sip water thru a straw, to hold a biscuit to my mouth so I could nibble the edge of it.  Too weak to toilet myself he would change my incontinence pads, lift me from my bed to toilet me on the bedside commode, to wash my face and help me to swill a little mouthwash as I was too weak to manage to brush my teeth or allow him to do it for me.  I was too weak to leave my bed, my house or attend the dentist for regular check-ups. However, I had persistent pain in my mouth that wouldn’t go away.   My husband manhandled me to get me dressed and downstairs to the car and drove me to the dentist for an urgent appointment. It was confirmed, I had an
abscess under a tooth for which the dentist prescribed Amoxicillin 500mg x 21 tablets.   Due to my anxiety with dentists – only brought about those last twelve months by the un-sympathetic dentist he had replaced –  he also arranged for me to go to a local private clinic to be sedated so that the abscessed tooth could be removed.

That first course of antibiotics the dentist prescribed didn’t work.  My husband telephoned the dentist to ask for a repeat prescription for more / different antibiotics and was told it was dental policy that he would have to bring me in to see the dentists again.  Even knowing I had a debilitating illness, they could not make an exception.    My husband explained I was too weak to leave my bed and return at that time.  Three weeks later and still very weak, he managed to get me to the dentist where I was prescribed Amoxicillin 250mg x 21 tablets.  
Unsurprisingly, this weaker strength antibiotic didn’t work.  And by then my M.E had again left me too ill to leave my bed.  My husband rang our GP and explained the situation - we have been with the same GP practice for over thirty years so they know us and were learning about my M.E. illness with us.   For a month, my GP prescribed two courses of two different antibiotics to be taken together.  The first week was a course of Metronidazome 400mg x 3 daily for 5 days and Amoxicllin 500mg x 3 daily for 5 days.  The second week was a course of Metronidazome 400mg x 3 daily for 1 week and Erythomycin 500mg x 4 daily for 1 week.  Shortly after this last course of antibiotics, the appointment for tooth extraction under anaesthetic came through.  

On my appointment day, my husband and daughter helped me prepare and took me to the appointment.   However, the anaesthetist doubted and confirmed my not being strong enough to handle the anaesthetic when he asked me to grip his hand.   I was unable to grip his hand tightly enough because the physical effort (even with help) it had taken me to leave my bed, dress, get in the car and be driven to and walked into the dentist treatment room had left me barely able to stand even with my husband supporting me. So, no anaesthetic for me!  Thankfully a very understanding dentist, aware of my limited abilities, if not the actual illness M.E  (and reasons for my dentist-related anxiety), allowed my husband to remain at my side to comfort me, while he gently injected the inside of my mouth multiple times,  removed the affected tooth and cleaned away the abscess from my gum.  Apparently, the abscess had been large and had gone down to the bone – unsurprising considering the length of time and courses of antibiotics it had been treated with. Thankfully my mouth healed well but the whole episode again led to me being bedridden and sleeping 24/7 for weeks. 

Since changing dental practices it is only in the past 18 months that I have been able to attend dental check-ups, still with my husband's support and use of a wheelchair, but our new dentist is faultless, and very understanding of my limited abilities if not the actual illness M.E.  But what happens if I am too ill to attend an appointment?  The severity of the M.E illness’ symptoms fluctuate daily and throughout the day.   I can literally be walking with my walking frame one minute then desperately needing to be horizontal and resting or sleeping the next.   Dental policy is that I will have to pay for an appointment I can’t attend at short notice   (at least three days’ notice of cancellation from what I recall).    I understand this is so the practice can offer my appointment to someone else, an opportunity to charge that other person for treatment which is after all the nature of the business.  


I currently consider myself to have a moderate level of M.E – I’m doing well :)  I am unable to work or lead the independent, spontaneous life I once enjoyed but I keep positive (mostly) only occasionally thinking of the next relapse lurking just round the corner.   

Thank you Ryn. She has told me that she and her husband had to write EVERYTHING down when she was going through her diagnosis. There was so much going on! That would explain the accurate info in her blog post! I can remember writing everything down too, it is so easy to lose track with brain fog as well as everything else!

Love,

Sally xx
and Foggy (OBVIOUSLY)

Failure

Hi!

Foggy is on his way back to the UK after having great adventures in Thailand over the Christmas period. Thank you Kat and co for Foggy-sitting. He is off to Cape Town next...squeeeee.

I have news.

I withdrew from the School of Social Entrepreneurs (SSE) Programme just before Christmas. It was a very hard decision to make but there are many reasons as to why I couldn't continue. I had big ideas about what could be achieved for Foggy and our advocacy. The year-long training programme and grant would have opened up many opportunities. However, at the end of the day, setting up ME Foggy Dog as a CIC (Community Interest Company) was still entirely reliant on my brain and my one-pair of hands. Since I created ME Foggy Dog three years ago, wonderful volunteers have come and gone and many M.E peeps have offered to help. However, their health is as unreliable and fluctuating as mine and so, through no fault of their own, the work doesn't get done and I end up doing it myself.  Until I manage to recruit a fit and healthy volunteer who can dedicate time and energy to our cause, Foggy's adventures will continue as they have done since 2014.

The grant would have been a great help. It would have covered our admin costs, updated our equipment and most importantly - Foggy could have got re-stuffed! The eagle-eyed amongst you will have noticed that he has lost a lot of his puppy fat over the past 3 years. 

One aspect of the CIC was that I would have started to earn an income from my Foggy work. I have never earned a single penny from Foggy and this was new territory for me. I will never take a penny from donations and so another dimension had to be added. I had planned on delivering talks to raise awareness of M.E to healthcare/education professionals. I would be paid to deliver those talks. However, I have never been paid for any of my talks and so I think it would have been incredibly difficult to raise an income...despite putting in a lot of hours. I also found out that I would have to pay an accountant £150 a month to do my books as a CIC. I would be working myself into the ground to pay the blooming accountant! That doesn't make sense to me.

Many of you will have seen my mini videos at the end of SSE training days. I found the training days exhausting. I had to leave every session early as I could feel myself wilting and still had a long journey to get home. The SSE have bent over backwards to accommodate my health needs. They have been honest and said they know nothing about M.E but were happy to learn and adapt to help me. The SSE is a fantastic organisation and I am grateful for their support. However, as I have already said, it is just me, my brain, and my energy levels at the end of the day. Setting up a CIC/charity, is hard work for anyone; for someone with a chronic illness, it is near impossible. I don't believe in 'can't'- and I gave it a go. I needed to see whether I could do it. I now know that whilst I have the necessary passion and drive, my body is saying 'no way Jose'.

Foggy needs to evolve, otherwise, our campaigning will become stale. I still plan to stop fundraising for the ME Association in July. Hopefully, we will leave on a high by raising £10k...we will see. I now have to think of a plan B. I might support a different M.E charity or maybe I could crowdfund for a specific research project...I don't know yet. Lots of thinking ahead. Foggy will live on, I just don't know exactly how at the moment.

I feel like a failure and am so sorry I am unable to grow Foggy and do even more for the M.E Community. 

Love,

Sally and Foggy (OBVIOUSLY)
xxxx

Wednesday, 27 December 2017

Awareness Talk at a Dental School

Hi!

In the past month or so, I have asked for help a number of times with an awareness talk I am delivering in January. I have had a few replies but am giving it one last-ditch attempt before I get on with writing the presentation.

This is the blog I wrote and sent to my dentist (which is a university dental school) to help them understand how attending a check-up affects my symptoms. Death by Lighting   They contacted me to say that they know nothing about M.E, acknowledged the knowledge gap, and invited me to
deliver a training session to staff and students. These students will scatter across the UK post-graduation, taking their newly acquired awareness with them and so it was a no-brainer for me.

So, this is OUR/YOUR chance to educate your (possible) future dentist. Please let me know if anything could be done to improve your dental experience in terms of your ME/CFS. So far, types of anaesthetic and cancellation policies have been mentioned. Anything else? 

One thing I simply know nothing about is whether dental work is ever possible on housebound/bedbound ME patients. If this is something you can answer please contact me via mefoggydog.org. I would assume that sensory overload would be too great for even a check-up to be possible. I need to know if this is correct.

Love,

Sally
(and Foggy OBVIOUSLY)

Friday, 22 December 2017

Employment and ME

Hi,

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)