Basic Stuff
- Name: Anna Marie
- Country: England, United Kingdom
- County: West Yorkshire
- City: Huddersfield
- Gender: Female
- Age: 50
- Education: Masters Degree
- Primary Illness: ME/CFS
- Diagnosis:
- Chronic Fatigue Syndrome (ME/CFS)
- Postural Orthostatic Tachcycardia Syndrome (POTS)
- Irritable bowel syndrome
- Hypothyroidism, self diagnosed autism
- Year Illness Began: 2002
Functioning Interrupted
Work Interrupted
- Former Occupation: Architectural technician
- Job Responsibilities at Former Occupation:
Drawng up house plans, surveying houses, design work, client meetings, building regulations drawings, planning drawings. Planning application submissions
- Current Occupation: Ventilation design engineer
- Current Job Responsibilities:
Technical support for the mechanical ventilation with heart recovery department. Training new designers, quality assurance for ventilation designs
- Years of Work Lost: 15
- Current Work Status: Still working
Income Interrupted
- Yearly Income Before Becoming Ill:
£15,000
- Current Yearly Income:
£7,500
-
Minimum Current Annual Income Loss:
£21,956
- Total Projected Economic Losses For Years Not Worked:
£340,896
Other Interruptions
- My parents or other family members have provided financial support
- This illness has severely impacted my ability to financially prepare for retirement
- I reduced my work hours
- I left my job or retired early
- I took on jobs with less responsibilities than I otherwise would have
- I believe this illness contributed significantly to a divorce or loss of an important relationship
Most Impactful Loss
My marriage ended in divorce after 15 years and 2 children due to my husband inability to love me when I was ill. My career stopped and changed direction to accommodate being unable to sit up, reliably concentrate or travel out of the house. travelling, walking, gardening gone.
My Story
About 25 years ago (in my mid 20s), I started getting unexplained fatigue and then age 30 I got "wobbly legs" when my legs wouldn't do as I told them. I could walk a few steps normally first thing in the morning but then they'd look like someone with severe MS (I asked someone who walked like me what they had). It came on suddenly and I went to A&E and got "functional disorder?" written on my notes and a referral to a psychologist.
The psychologist didn't help and by then (about 9 months later) I'd found a miracle worker/chiropractor who over about 8 sessions, got my wobbly legs and fatigue better. He worked in Falmouth chiropractic clinic (Alex grant) and it involved a 300 mile train journey with booked wheelchair assistance that failed to show up 50% of the time. There were multiple times I ended up lying on station floors begging strangers for help.
However, every pregnancy and almost every minor infection (cold, tummy bug...) I had from then on sent me back into wobbly legs and fatigue. People suggested I had ME/CFS but I got told I didn't by the Leeds ME clinic because I had wobbly legs. And I thought ME couldn't get fixed by a chiropractor or come and go.
All my GPs refused to refer me to anyone except psychological services. When I tried the NHS psychological services, it was abusive looking back on it. When the last one actually started yelling at me, I recognised it as such and stopped. My husband, parents and GP all thought it was psychological and although it didn't feel like it to me, I couldn't see any other explanation so I tried many forms of good psychological help privately over the years. They helped me cope but did nothing for my fatigue and wobbly legs.
I made a bunch of videos about it about 10 years ago when I (wrongly) thought I was better for good. https://www.youtube.com/playlist?list=PLPBJoTvLs3NbVBVHmPQhFRB5HJl-RDwF3
Over the next few years I got more frequent relapses and the chiropractors magic got weaker. Also my marriage fell apart and I gave up my job because I was off sick half the time so completely unreliable.
By then sick meant bedridden except propped up to eat and getting to the loo and back. I could concentrate for an hour at a time but lacked enough energy to be propped up in bed enough to move a mouse to work at all.
Eventually in 2016 I joined an ME Facebook support group even though I didn't think I had ME because I was fed up of feeling isolated and ill and undiagnosed. Within a few days people on the group had sent me the international diagnostic criteria which included "gait ataxia" (wobbly legs). They told me it's not uncommon for ME to be relapsing-remitting. I saw a new GP who happened to have recovered from chronic fatigue a few years back so she listened properly. She diagnosed me with ME and suggested the AIP elimination diet.
The diet got rid of my wobbly legs over the next few months and reduced my fatigue and brain fog a lot.
In 2017 i started reishi and it stabilised my crashing cycle of 5 days crashed out of every 7.
In 2018 my 15 year marriage officially ended although my husband hadn't felt able to love me whenever I was ill so looking back it really ended about 10 years earlier. I fought to have my 2 children half the time with my ex claiming I wasn't in a state to look after them and he should be compensated for the extra money he'd need to care for them without me.
I started a good relationship later that year with a kind friend I'd know for a long time that's still going strong now.
In 2019 i went on to LDN (low dose naltraxone) and was able to potter around the garden for an hour a day and sit up with feet up most of the day with a long afternoon sleep.
In 2021 i got covid and was unable to talk more than a couple of words at a time, or walk to the loo for 2 months.
Later that year I moved onto a narrowboat with my kids on the basis that if I stayed ill, at least it felt like I was part of the world outside from a bed in the bow of a boat on the canal towpath. And the kids could help with any practicalities. And if I got better, fantastic.
In 2022 i started ozone ten pass treatments and got dramatically more energy after each treatment. I did 10 treatments between July and December 2022. Then since January this year I've been doing home ozone/h2o2 using different methods and experimenting with dose / frequency / methods. Now I do ozone body bag every week or 2. A year on, I rarely need to sleep in the day, my POTS is gone, I can stand up with no problem. My walking got slowly better until I could walk 2 miles slowly in October last year.
Then my walking started setting off very high heart rate (up to 150bpm) and I got bad POTS symptoms from walking unless I stopped every 50 metres. But I still had lots of energy and have been painting the boat, doing rewiring and plumbing, cycling with electric bike. I can do stuff most of the day and then cook a meal. And sometimes do stuff in the evenings too.
This year, following my sons diagnosis with autism, I've self diagnosed myself as autistic and have been exploring the overlap between me/cfs and autistic burnout/overwhelm.
I've been looking for a solution to the high heart rate walking and what's worked hopefully now is a similar chiropractor to my first one at the same clinic. And now very recently a local Chinese acupuncture doctor (Dr Liang at Renjis Chinese medical center) .
Most of the last week I've been able to walk non stop without my heart rate going super high (120 - 150 bpm). My legs feel like they've freed up and I can easily walk at normal speed. In the last week I've had a few days doing 1-2 mile walks 2 or 3 times a day.
I'm really hopeful that at age 50 I can pick up my life that I left age 30.
Obviously, I've tried many many many times more things than listed here and most did nothing or made me worse or maybe unnoticeably better.
Snapshots of my life and re-runs to repair the disasters:
https://mossy-stone.weebly.com/blog/category/red-cottonwool-ball
