I own these illnesses.
Refusal to allow them to own me is important for my mental wellbeing.
Using a combination of herbal teas, patch opiate medicines and emotional boosts such as singing, bathing and social media, I get through my days happily.
Although heavily medicated I remain as active as possible within my home. I use a wheelchair if there is lots of pain and/or I am dizzy. I hate passing out in public. I have a pendant at home in case I pass out if I do try and walk around more than a little but I’m generally close to a seat at home.
Thirty seconds of dance feels amazing and can still be achieved occasionally. Rarely there are times when I dance for even longer but I’m never given notice of these events so can’t match up with social gathering or outings.
A nurse, Nickie, at the Bowel Retraining Dept at UCLH said she’d never met someone with so many things wrong with them…
I’m still trying to work out whether to be offended. Was she impressed? I’d like to think that the nurse was being supportive and recognised the minute by minute battle endured by myself attempting to control my bodily functions. Her letter back to my consultant made me think that she was an angel, I digress again…
Here is ‘The List’…
Ehlers Danlos Classical/Hypermobility Syndrome mutation crossover – affecting dislocation of joints, skin, movement of internal organs and extra flexibility of connective tissue over all of my body. Hands and legs are especially affected. Bad healing and easy bruising. Very painful condition. Known as EDs
Cystic/Bullous Lung Disease – affecting lungs, digestive system, breathing, speech, walking, any activity, exercise is limited to location and environment – Born with this condition and then smoked cannabis so now called Emphysema COPD at stage 4.
Mitral Valve Prolapse – MVP affecting heart thankfully not too serious, causes POTS,
Postural Orthostatic Tachycardia Syndrome – makes me faint, dizzy and/or pass out.
Temporomandibular disorder TMJ – dislocation of jaw, mouth, painful chewing and painful ears – can be super sensitive to audio so rarely listen to loud music.
Endometriosis – affects trunk, mainly abdomen pain from internal Endo tissue growth.
Hiatus Hernia, Oesophagitis, peptic ulcers – affect stomach, throat and eating, mostly contained by my strict diet plan worked out over years of keeping food diary.
Breast cysts – affects my breasts and ribs with pain, difficult to sleep, can’t wear bra.
Spine and Pelvic Pain – disc bulge and curvature due to EDs plus numerous cysts removed from spinal and pelvic junction, doc says, wear and tear is twice my age – making it 100 yrs old! Without Fentanyl patch the pain would leave me incapacitated.
Gout – affects my toes on both feet but right one worse, affects walking and sleep (Gout – I know strange eh? I don’t drink or smoke cigarettes and have had painful toes since I was a child and have always been under weight, go figure).
Interstitial Cystitis – affects bladder, retention and incontinence, lots of pain, wakes me up during the night. Very painful it ensures that I attend the bathroom four or five times an hour, sometimes more, sometimes less. It is rarely comfortable.
Bladder mesh – awaiting removal of this unsafe medical device, affects vagina too. I could write a book on this area of pain in my life but not until it is over and I am well enough to…interferes with sexual activity too, like stops it.
Internal Haemorrhoids – affects eating, appetite, is very painful, no control and unable to evacuate normally since the stapled hemorroidopexy. Extreme pain on sitting and moving between sitting/standing positions…also have Rectoentrocele.
Cyclic Vomiting Syndrome – unable to do much for myself once retching episode starts – thankfully this is not a constant illness like my others – I have long breaks of months between episodes if I am very careful and do not fatigue myself.
Lichen sclerosis – Severely itchy groin. They suspect the mesh sling is causing an auto immune response in my body. It is impossible to deal with in public, I end up having little spasm with it, like a tick. Embarrassing, but more socially acceptable than scratching myself there…
Cervix/Uterus removal in 2005 (womb removed)
Menopause finished – hormone replacement therapy started 2018 this is normal…finished HRT in November 2019 because of advise from the breast clinic. Now bleeding again.(?) Have continual cold sweats, cannot remember the last time I slept without having to change bedding through sweating.
I also have the usual side effects, medical and/or environment like Eustachian tube dysfunction (blocked nose), Irritable bowel syndrome and am prone to hypoglycaemia.
Fibromyalgia – recently diagnosed but not agreed by myself.
So, why stop there? Let’s list my mental health illnesses that I totally own too (sort of);
Post traumatic stress disorder
Emotionally unstable disorder
Adjustment disorder
Lucid visions
Personality disorder
…Cynicism is not a mental health illness, just a trait.
I like things done as they should be…and I get upset when they aren’t – this could be undiagnosed autism spectrum associated with Ehlers Danlos – or just could be me.
So, there you go, just in case you were wondering…
All diagnosed by consultants helped with skin and tissue biopsy, surgery, scans, x-rays – all diagnosed by professionals and until 2012 I was completely in awe of all doctors and what they could do for me. I am still in awe of most doctors.
After spending a very large proportion of my life in denial of most of my illnesses – a coping mechanism, this list was a fairly therapeutic process.
If you have read this far well done you!
My suspicion is that there are many people with ‘loads of things wrong with them’ such as myself, that are being super brave and trying to live as normal life as possible.
Good luck to all of us!!!
We’ve had an extra health worry this last year called covid19. I’ve been lucky and not had it, nor have I had a test. I did however, get Shingles in my eyes, twice and felt very ill for months.
unextraordinarybint Samantha Harris in London, England. 