Every reality show seems to have a journey these days so this is mine so far:
This time last year I was walking, running, climbing with my family. We were making plans for our first family holiday abroad for this year, taking our children to the park, climbing and many other activities in the local area. I have always been a hands on, active mum. I never wanted to be any different.
When I had my first child, I remember being in a soft play area, crawling through a bright plastic tunnel with him when another mother said to me 'You can tell he's your first, you won't be like this if you have more'. I didn't understand. I never understood why people have children and then send them off to boarding school, or take their children out and then don't spend time with them.
We call them coffee mums. They deserve a post of their own.
Last summer I started to get worsening pains and feeling more off balance than usual. I had been having regular pains on and off for nine years so thought it was just another period of this happening. Sometimes it would lead to a week in bed where I could barely lift my head or arms up, but then it would pass again.
I had a particularly painful shoulder that had been niggling for a couple of years so I thought maybe getting physio on that would help. The physio put it all down to my posture and gave me exercises to do for my shoulder but they hurt my neck and back that already caused me pain. After a few sessions it was made clear that most people didn't go back after that and the end of sessions paperwork was brought out.
After a few weeks of this I decided I couldn't stand the pain anymore and got one of our hiking poles out of the shed. I found it gave me a little more balance but was also putting a lot of pressure on my arm and wrist, causing me additional pain there.
I then looked into alternatives and decided on a walking stick with a moulded handle. This meant I could only use it with one hand and it wasn't long before I developed an area of hardened, peeling, painful skin on the heel of my hand. We tried wrapping it in racket tape but that did very little and kept unpeeling.
Having been on crutches during pregnancy I knew the pain they caused my arms, shoulders and hands so knew they wouldn't be any help.
I was feeling increasingly weak, wobbly, unsteady, lightheaded and the pain was constant. I went to the GP and explained that the pain had now got to a point where I couldn't control it any more and I was scared that the symptoms were worsening and not going away. I was scared of falling and finding everything incredibly hard work.
It wasn't long after this that I could no longer climb up or down the stairs at home. I was left bum shuffling up and down stairs. We installed grab rails at strategic points to try and help me, put a stool in the bathroom to try and help me into the bath and purchased supports for my painful joints.
The GP put me on neurological painkillers, referred me to specialists at the hospital and said I probably had fibromyalgia.
Things deteriorated. The medication made little difference except for helping my IBS (irritable bowel syndrome) and giving me incredibly vivid dreams. I now needed a rollator so I could spread the pressure over both arms and shoulders as well as having somewhere to sit and rest regularly. I was now having severe difficulty walking the distance of two houses to the end of our street. This was four months after all of this began.
I went back to see the GP but she was away for a few weeks, so I saw a different one. He seemed to genuinely want to help me and tested my muscle strength, increased my medication to the highest dose and referred me to a different specialist.
Not long after that the internal shakes I had been feeling for some time erupted into visibly violent shaking of my arm and legs. Sometimes my head and other arm shake too but I keep ignoring them hoping they will go away. My legs started shaking as soon as any weight or pressure is applied to them, so I could no longer walk with the rollator. I needed my first set of wheels.
I felt so lost and like a fraud in the mobility store. I was so ashamed to need a wheelchair I practically begged my husband to buy the first one we saw that had solid but textured wheels that could be self-propelled. My pains were still constant and all over my body. I was so tired and lacked energy and strength so much I could barely stand at the till whilst they put the purchase through. We bought a folding, lightweight self propelling wheelchair. It meant I could go out more and not worry about getting too tired or falling over with my legs wobbling.
I saw the specialist at the hospital. The rheumatologist examined me, checked my extensive medical history and confirmed it is fibromyalgia and chronic fatigue syndrome, but it could also be MS because of the extra symptoms I have been having so he wanted me to see the neurologist too to rule that out.
(I should say at this point that I had been trying to find out the cause of my pains for the last nine years so had been through ultrasound scans, sigmoidoscopy, hysteroscopy, transvaginal ultrasound, every blood test known to man, had seen a neurologist 10 years ago, had been for an MRI when I had my first week of weakness as a teenager, allergy testing, food elimination diets and more because both fibromyalgia and CFS are diagnoses of elimination- meaning they have to make sure it isn't anything else first before they call it those...like IBS).
The neurologist could not have been more dismissive if he tried. He didn't even do a full neurological exam. By the time I saw him (after my appointments were postponed by the hospital) by legs were tremoring terribly as was my left arm. He said it isn't MS (but I need a head scan to confirm that), that I need to get used to living with my symptoms and that my nerves are inflamed. Goodbye.
So here I am, gone from active and hands on mum to being so tired I can barely leave my bed most days and need a rest after brushing my teeth. I can't even brush my own hair without pain. Eating a meal tires me out.
This, right now, is the longest I have been infront of a screen in months and I know I will have a migraine tomorrow or later tonight as a result even though the brightness is turned down low.
I got in touch with the council for an assessment because I was so desperate for help. I couldn't get down the stairs or back up without being exhausted from bum shuffling. Getting back up the stairs was becoming a real issue as I just didn't have the energy to haul myself up step by step on my bum anymore.
I had almost fallen off the side of the bath whilst trying to get to the toilet in the bathroom and was so depressed I didn't see the point in being alive anymore.
The OT (occupational therapist) came to see me. She could see I was struggling and that I couldn't get around my own house.
I fell into the bath and landed on some plastic boxes which broke into shards- uncomfortable, was being lifted into and out of the bath by my husband, was crying almost daily in pain and frustration and felt useless. Then I fell on the landing and was terrified of falling again and landing on the bottom of the stairs.
When the report came back, they recommended my bedroom be moved downstairs into the lounge for my safety (something I had already been discussing with my husband) and they would provide some equipment to help me have less falls.
I now live in my lounge- now our bedroom. It is the only way from the front of the house or upstairs to the kitchen so is a real thoroughfare. I find it almost impossible to get any rest down here and the dogs are forever in my bed. I have a commode at the end of my bed, a perching stool next to that to help me wash, a second wheelchair I bought for inside the house because I was so fed up of being stuck in bed.
My life is so different from this time last year I cannot believe it.
I cannot wash or dress myself. I can't cook, stand, walk or even read a book.
My legs both shake uncontrollably when pressure is put on them and my left arm does the same almost constantly. I have pains all over my body and feel worn out and need a rest after the smallest exertion of energy- like brushing my teeth or hair.
I have no access to a bathroom for a bath or shower.
I have a safety button to press when I fall so someone calls the ambulance to come and pick me up, check me over and go again. I also have various aids to help me sit up, lie down, remember my medications and open jars etc.
All the aids and help I need has pictures of elderly people on the packaging or leaflets. I fall regularly and have arranged my bed, chair, commode and stool so closely now that I can't fall without catching one of them, hoping to minimise my falls.
I have still been finding it so exhausting being out anywhere with the family that I decided to look for a wheelchair where I could rest my head back when needed. I was so lucky to find one on an auction site.
It came today and reclines to almost lying flat with two different headrest styles. The sides can be lifted easily to aid transfers into bed or onto my chair. It even has a leg support that lifts my leg up so it won't shake so violently I hope.
I had a PIP (personal independence payment) assessment a few weeks ago and have been awarded the money, so am hoping we might be able to get a car I can be wheeled into as I hate getting into and out of our car- it is really scary and I fear I am going to fall everytime. I have been talking to people at motability and trying to make sense of it all but I still don't really understand how it all works.
(My husband has had his PIP stopped despite them acknowledging that his condition has not changed since his last claim so I am fighting that)
To look at me when I am in a position where my legs are supported and if I hide my left arm (something I am getting really good at) you wouldn't know there is anything wrong. People who know me can see when I am exhausted. Often my friends and family spot it before I know myself.
Through the years I have lost trust in the NHS so went recently for a private MRI scan of my head and neck. It has identified an issue in my neck causing the nerves to be compressed and I strongly suspect the same may be happening in my lower back, but I cannot afford the scans any more.
I have the NHS head MRI this week which I know will show it is not MS, but I also know that if I don't go ahead with the scan anyway they will twist that as me being uncooperative or wasting NHS appointment times. I wonder whether they will say 'It shows it is not MS, goodbye' or 'It shows it is not MS so let's investigate and see what is causing your symptoms'.
My last significant fall was a little while ago now and I am pretty sure I broke my fingers, but I was too exhausted to go and wait hours at A&E or the walk in centre to end up with it strapped up, so my husband strapped my fingers up for me instead.
I have found acupuncture to be useful, relaxing and pain relieving for several hours. Also Hemp cream helps me get to sleep, as do Hopi ear candles. I tried CBD oil but, despite the horrendous taste, it did nothing to help me. I have a lot of thermal self heating supports and a body warmer that plugs into a USB power pack then heats up. Between those and the wheelchair I hope to be able to get out more with my family, even if I am just a presence there now more than an active participant.
Life is for the living. I had no idea this would be happening this time last year, so I mean this- live everyday to the full and do what you want to do (within the law). Look for the little things in life for joy and a reason to carry on.
I have found great support and comedy with a couple of supportive online social media groups filled with people struggling with the same pains, fatigue and mental health issues. They help me more everyday than the NHS has. They have been there for me when I nearly wasn't.
If you know there is something not right, please follow it up, fight for yourself and don't be fobbed off. I even tell doctors now when I disagree with them, tell them I am not going to be fobbed off. You have to.
To be continued...
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