M.E./C.F.S.: Financial Shame

Hello,

Let's talk about money. Yes, the one thing most people avoid talking about.

I talk openly and honestly about all aspects of M.E and it's knock on repercussions but have never fully addressed this aspect of having a chronic illness. So, here goes.

This blog is inspired by THIS YouTube video by Sophie Eggleton. It was posted back in 2015; I have only just discovered Sophie's YouTube channel. I agree with everything Sophie says in the video but here is my own spin on the subject.

I have no money. There, I said it. Since leaving full time employment back in 2016, I have only had the brain power and energy to earn drips and drabs of cash. Just enough to pay my bills each month. If it wasn't for the Bank of Mum and Dad, my situation would be even more dire than it is now. I am so grateful to them for the occasional bailout when an unexpected bill comes in. For 2 years, I have been too embarrassed to talk about my money problems, I have only confided in a couple of close friends. These are friends who, whilst not having M.E, are in similar financial situations for various reasons. 

I am 41 and live with my parents. I hate having to admit that when it crops up in conversation. I am very lucky that I get on with my parents and am very grateful for the roof over my head. My shame comes from my hopes and dreams of my childhood. Never would I have dreamed that I would be living in my parent's house at the grand old age of 41, childless (I never wanted any) and a spinster (ouch). My parents, like Sophie's, are retired. They should be able to enjoy their hard-earned time together without having an extra mouth to feed. I simply can't earn enough money to be able to afford my own place. I

don't have a boyfriend/husband to share bills with. House prices in Portsmouth are very expensive and, even without M.E, an average solo income would struggle to pay for housing and bills. Add M.E into the mix and it is a dire situation to be in. I own my own business (www.wordsangel.co.uk - shameless plug!), it's still relatively new and still building. It is ticking over nicely and growing steadily. However, I am unable to put in the necessary 18 hour days to build it as much as I would like. Every time I go business networking I feel exhausted just listening to tales of breakfast networking, driving to conferences, working lunches, and evening networking sessions (that is all done on top of a working day). Most self-employed people don't stop. Many would argue that working so hard is bad for health and well-being. True. However, it is necessary if you are a start-up business with one pair of hands and one brain.  Self-employment allows my body to work in tune with my in-tray. I can set my own hours and work from my bed if necessary. It allows me to make the best of a bad situation.

When I walked away from Uni with a postgraduate degree, the world was my oyster. I am an ambitious person and believed that I would get myself a good job, save cash and work towards getting my own place and build a stable future for myself. M.E has completely stopped that from happening. I can't hold down a full time job because my energy levels won't allow it. Even part-time hours won't work as the hours don't fluctuate along with my energy levels and symptom flare ups. The pressure and guilt I place upon myself is immense. I always feel as if I have to justify my life and make excuses because people don't understand my illness and subsequently, my situation.

Social media doesn't help. I am sick and tired of looking scrolling through posts of friends who are buying houses, buying furniture for their new houses, getting excited about their upcoming holidays, etc. I keep comparing myself to fit and healthy people who are able to work hard and reap the benefits of putting in long days at work. I wish I could be one of those people. Instead, I regularly have to explain why I  am in bed having a nap while they are at work slaving away to afford their lifestyle. 

Maybe I/we need to stop feeling ashamed of our financial situation. We are skint, not because of laziness or poor money management, but because of a disability. We are making the best of circumstances that are out of our control. We should be proud of what we manage to do on a daily basis despite having a life-altering illness. Maybe one day, I'll allow myself to believe that and stop beating myself up.

Love,

Sally
and Foggy (OBVIOUSLY)
xxxxx

Cervical Cancer Awareness Week

Hi,

I commented on this article earlier on Twitter. It's Cervical Cancer Awareness Week (in the UK) this week and there are many posts and articles online talking about cervical smears. Unfortunately, my tweet caused a few people to use it as an excuse to throw negativity at me so I have deleted the tweet. I don't respond to negativity. I figured I would write a blog instead to explain my view.

1 in 4 women in the UK are not having regular smear tests due to having a poor body image. I don't have a very good body image myself and a nurse friend once called me body dysmorphic (I think I'm bigger than I am/unattractive). So, I completely understand that smear tests would cause girls/women to feel embarrassed or uncomfortable.

However, millions, if not billions, of pounds have been spent on cancer research to reach the point of being able to offer free tests to diagnose this disease and to know how to fight it. To have that resource available but it not being used to its full capability is crazy. What will happen if/when these girls and women want to have children or need to be tested for an STI? All involve doctors and nurses being in that particular area of a woman's body. A sexual organ is the same as a big toe to medical professionals. They don't see it in the same way as we do.

To flip my argument around to an M.E perspective. Hands up M.E peeps who wouldn't mind (yes, we'd cringe and squirm but...) a rectal exam or cervical investigation if it would lead to a diagnosis or treatment? I would do ANYTHING if it would lead to being 'fixed'. I know I'm not alone in that. I think this article highlights the difference between 'healthy' people and their views on health checks (to prevent them from getting sick) and chronically ill people who would do anything to get better.

I hope I've made my point clear, I don't mean to guilt trip anyone. It is YOUR choice whether to have the test but it's a wasted opportunity if you let embarrassment stop you from attending your free appointment.

Love,

Sally xx

(brain fog has kicked in so sorry if my writing is a bit blah)

Eye Problems With M.E./C.F.S. - New Symptom!

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)

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

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)

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