What do you see?
This is me, today ~ which as it turns out isn’t such a great day.
I have a temperature of 37.9 degrees and I’m struggling with Post Exertional Malaise. Thing is ~ do I look in pain? Do I look sick? Do I look disabled ~ or as I prefer differently abled?
It took me ages getting dressed today before coming downstairs. Medication taken plus extra to bring down the temperature before making the first morning coffee. Mug in hand I shuffled into the lounge to my area and sat down, feet up on footstool and blankets plus supports arranged suitably around me.
Now beautifully comfy I raised my mug to take the first delicious sip of my morning nectar ~ at that exact same time the doorbell rang. Loki jumped up off my knee to let the “intruder” know he was busy “guarding and protecting” our home! As he jumped he knocked my hand and the full mug of coffee spilt its entire contents EVERYWHERE. The coffee flew all over me, my hair, my laptop, my phone, the sofa, my blanket, the floor and consequently my socks and a very contrite Loki is now sporting a coffee stained and aromatic cone.
So, chuntering madly I used kitchen roll to soak up the coffee before cleaning it properly, including using the special sofa wipes to clear the sofa arm and cushions. Then I stripped off and put my clothes into the washing machine and bear crawled up the stairs to my bedroom and bathroom. It’s a good job the window cleaner wasn’t around as me in the buff bear crawling up stairs may have scarred him mentally for life.
I sat in the shower and let the coffee wash off ~ washed my hair and then climbed out and sat on the bed in a towel to “air dry”. Eventually, redressed, I shuffled my way down stairs and onto the sofa to rest. My eldest daughter came downstairs and made me another “first” mug of the day of my sweet caffeinated nectar. She made the perfect mug and I was extremely grateful to her. Thankfully I didn’t end up wearing this one and enjoyed its warmth and comfort as it slipped down.
It made me think, as I snapped the picture at the top of this blog, what do you see? It’s so difficult to “see” people with invisible chronic conditions and to look at this image you really can’t tell can you?
Yesterday I had my first rheumatology physiotherapy appointment. It was over an hour~long and it turns out my physiotherapist specialises in treating patients with Fibromyalgia and Hypermobility Ehlers~Danlos Syndrome. We walked through my long medical history before having a physical examination of all my joints, movements and pain areas. Lying on the examination couch I had my movements of my legs and hips assessed. In some cases I couldn’t move my legs unaided and so the physio had to lift my leg and move it for me and needed help with my shoes and socks due to my limited mobility and movement.
We talked about my past appointments with the three rheumatologist consultants I have seen over the past few years. I had discussed Hypermobility EDS with all three with limited success. One said I was hypermobile and possible EDS ~ then he retired and I didn’t see him again. The second was only interested in Lupus ~ which I didn’t have and instead my “Lupus” rash was found to be caused by, after a large patch test, numerous allergies. Finally the third rheumatologist was all about the Fibromyalgia, which she diagnosed and I was very grateful. She noted issues with instability in my hips but didn’t really want to talk about hypermobility and EDS. However she saw that things weren’t right and wrote out a long detailed plan of phsyio to my physiotherapist which she is tweaking herself to help me the best she can.
Having a physio who specialises in Fibromyalgia and Hypermobility EDS is awesome. I scored 6 out of 9 in the Beighton Score contrary to the rheumy’s lower score. My knees bend right back, as do my elbows and both thumbs go back. My little finger is stiff and almost locked and I can touch the floor but not with the flat of my hands only with my finger tips. On further examination I have “floppy ankles” and very weak glutes which apparently also indicate HEDS.
The 9 points are made up of the following:
- One point if, while standing and bending forward, the individual can place their palms on the ground with the legs straight
- One point for each elbow that extends more than 10 degrees
- One point for each knee that extends more than 5 degrees
- One point for each thumb that, with the wrist flexed, can be manipulated to the forearm
- One point for each fifth finger that extends beyond 90 degrees.
The above score was used along with the past history of how flexible I was as a child. I used to do ballet, swimming and enjoyed attempts at synchronised swimming in the school pool. I was bendy and had issues with what I can only describe as my knee knotting ~ I would bend my knee and then it would knot, in the area directly behind my knee. It was incredibly painful and I had to very slowly move my foot forward to try to straighten my leg whilst massaging behind my knee. When it unknotted it would thump, like someone slamming their hand on a cushion. It was something I came to dread as it happened without warning when bending the knee in various circumstances, it continued to happen until my early twenties and then stopped. I didn’t dislocate my joints though but could do the splits and put my legs behind my head.On top of the childhood history we added up my fast labours; 8 hours, then 4 hours and then a very fast 2 hours with my girls ~ with no tears or stitches. My stomach muscles tore with the pregnancies requiring a belt, my bladder is stretchy and I can hold a very large amount ~ but not for long. Despite bladder stimulation therapy and other pelvic floor treatments, nothing worked and so now I’m like a toddler potty training and needing to be near a loo at all times. Added to that I had a double prolapse in my thirties, stretch marks at 16 for no reason, soft skin, dental issues and extraction and so much more.
I was told the only way to get an official doctors diagnosis is to pay privately to see a specialist consultant in London. To be fair, having my self~diagnosis fully validated by my phsyio is enough and spending money to have it added to my medical notes is ridiculous, for me at the age of almost 50 anyway. The truth of the matter is ~ the physio would be the same anyway and it’s not unusual to have both HEDS and Fibro together, plus of course the lurking Myalgic Encephalomyelitis too!
I am excited to be on my physio journey to work towards a healthier, less painful future.
My feet, those poor things at the end of my legs, are not “right” it would seem. I have been referred to see a podiatrist to make inserts for my shoes to support my arch and raise my heels. This in turn should help my ankle and hip pains.
I do have, tendonitis of my Achilles, but not bursitis of my hips ~ my hip pain is due the actual hip~joint not being “right” and so my physio has put a request in to my rheumatologist for hip x~rays.
Due to the stiffness and limited movement of my joints due to long~term hypermobility I am to start hydrotherapy to help me to exercise those joints with the support of warm water. I will start weekly half hour sessions from 17th December (with a two~week break over Christmas and New Year) for a total of 8 weeks. After that it will be reassessment time to see if I can then move on to physio “on land”.
What are my concerns? Randomly it’s putting on a swimsuit and getting into a pool with 9 strangers and it’s a mixed sex session too! So, now I am going to have to “groom” areas where hair grows and ask my youngest daughter for regular pedicures as I can’t bend down to cut my toe nails without pain.
I am psyched to be in the system and on a journey with specialised help to improve my pain and movement. I am looking forward to the hydrotherapy sessions to do the work needed but this comes along with the dread of getting my body out in front of strangers.
So, where am I going with all this? To be honest with you I don’t rightly know. Possibly to chat with you and share with you aspects of my life which can be invisible to those who don’t know me.
If you see me out I will be accessorizing with purple smart crutches and will wave them in your general direction. I have been suitably reprimanded for not using them when I should do and so now I am following orders and behaving, as much as possible anyway.
Sadly this means the dog walks are out of the questions and I have to be patient ~ I am doing me exercises, which to others would seem like nothing but are very tiring for me.
Here is the little note from my physio with her drawings of my exercises for the week..
Exercise 1 is the calf stretches, using the wall to lean against and boy do they pull on my solid calf muscles.
Exercise 2 is another stretch but sitting upright on the bed, turn my toes up towards me as far as I can before using a scarf or belt (not anything with give or stretch) to then firmly pull my toes further towards me and hold before releasing.
Exercise 3 is butt clenches ~ to practise throughout the day either sitting or standing.
Bizarrely these exercises really tire me and I can feel my body working as I do them. From being super fit and active all my life being in this position of not having the strength and endurance I once had is like a bereavement. I won’t regain the levels of fitness I once had but I hope to gain at least some of it back. Something is better than nothing and I trust and believe in my physiotherapist who is going to be with me throughout my journey for continuity.
As I changed into my pyjamas this evening I discovered I had worn my underwear inside out, how I didn’t realise when I did my bra up I have no idea! Pretty much sums up the day.
My dread of wearing a swimsuit has been somewhat allievated by the purchase of a beautiful swimsuit which is made as an all in one but has shorts under a pretty skirt which flows from under the bust. It is fully adjustable and very pretty, so my fear has gone down a notch. This is the swimsuit ~ maybe one day I’ll be brave enought to model it..
I have decidede to document my journey here and share my highs and lows, I’m dedicated and prepared to work at this and hope the road ahead isn’t too rocky.
‘Til next time