#i’m currently going through the worst chronic pain flare up i have ever experienced

[stillgotscars]

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[lifewith2loopykids-blog]

Invisible Disability Week

I think this is going to be a bit of a self indulgent post (so apologies in advance). Although I have a child, potentially 2 children, with hidden disabilities, our 8 year old ASD son and our 6 year old daughter just been referred for assessment, I also have hidden disabilities - Fibromyalgia, Spinal Stenosis and cervical spondylitis as well as a malaligned kneecap, Golfers Elbows, IBS - I think I should just see a vet!

It all began in July 2013. I had just driven home from dropping both children to nursery and, as I got out of the car, I felt a twinge in my back. I thought it was just stiffness so decided to get changed and go for a run. I only made it around 15 steps before the pain increased so I headed back for a shower, thinking it would help. I managed to mostly get dressed afterwards before the pain intensified and I could barely move, never mind contemplate putting my socks on.

The pain was so acute and intense that I walked out of the house seeking help. Luckily, two neighbours were just driving passed and they stopped to help me. When they saw the level of pain I was suffering, they offered to take me to A&E.

Before we left, my neighbour, Barbara, came inside to help me put my socks and shoes on - Barbara herself being crippled with Parkinsons Disease but, in that moment, she was the more able-bodied of the two of us.

It transpired that a disc had slipped/herniated and I was given pain killers before being sent home to rest (with two children under 3.5years).

A few months later, with the help of a lot of physio, I was improving, albeit still with pain. One of my most vivid memories of these months is going for physio on Christmas Eve. The physio was treating me with acupuncture at this stage.

I arrived for my appointment at approximately 2.30 on Christmas eve, passing a number of staff on the way in who were finishing early for the holidays. I went into the room, lay face down on the bed and the physio proceeded to place 6 acupuncture needles in my lower back and upper buttock area for the sciatica pain. He then said that he would leave me for a few minutes for them to take effect.

Picture the scene, me alone in a large room with a number of empty bays, lying face down with needles protruding from my butt, in silence. I lay there so long that the lights, which were on sensors, turned off. So there I am in the dark, timidly calling out "Helllooooo", wondering how I was going to get the needles out!! The physio did eventually return and release me.

One morning in February 2014, I woke up with pain in my neck, across my shoulder and down my arm. I tried to have some breakfast so that I could take some ibuprofen but I could barely get the spoon to my mouth.

Thankfully, my husband was home that day and he drove me to the local walk in surgery. The only way I could get in any way comfortable sitting in the car was holding my arm over my head - it was entertaining to see so many people "waving back" at me as we drove along.

After weeks of this pain, I was sent for an MRI scan and it was discovered that I had degeneration of the disc at C6-C7 (cervical spondylitis) as well as a cyst that was compressing on the nerve going down into my right arm. I was referred to a Neurosurgeon who sent me for further MRI scans and also a Nerve Conductivity Study (an evil test where electric current is passed through the muscles to measure the speed of the signal etc).

I met with the neurosurgeon and he said that he would take my case to the MDT to discuss surgery. He went on to describe the surgery, going in through the front of the neck to remove the disc and put a plate in place. He then went on to discuss the risks - 25% chance I would still be in pain, death or total permanent paralysis from the neck down.... He said a few other things but I couldn't process them thanks to sheer terror I was experiencing. How would I cope? I had two small children who needed me - not to mention my husband.

I fled that room feeling absolutely petrified. The neurosurgeon told me that he would contact me again after the MDT meeting.

A few weeks passed and the intense pain started to subside - as long as I didn't sit upright for long so the disc didn't get compressed and consequently compress the nerve into my arm.

By the time I saw the neurosurgeon again the pain was at a more tolerable and manageable level, provided I was careful, so he told me that I should manage my cervical spondylitis with lifestyle changes - no carrying shopping or lifting anything heavy (including my children 😢), no riding a bike, no swimming (other than backstroke so my back was in a line) etc.

I tried to continue working (at the time, I was working as a paraplanner in financial services) and used to take cushions in from home so that I could kneel in front of the computer when sitting got too painful or caused my fingers to go numb. After a few months, my boss made me realise that I really wasn't coping and I had to stop working. My family were my priority, especially our son who, at that time, was in the midst of the lengthy process of assessment for ASD.

So for the past few years I have been limiting my activities and managing my CS in that way. There are many times that I get frustrated and do things but then I will pay the price. For example, yesterday I decided to sort out the airing cupboard. As I am vertically challenged, most of the shelves are higher than me but I was determined to get it done.

That came back to bite me. I could not sleep last night due to the pain in my right shoulder and down my arm, my tinnitus is at the worst it has ever been and my arm kept going numb. The airing cupboard looks tidy though!

Two years ago, I felt strong enough to start thinking about returning to work but didn't know what I would be able to manage. I saw an advert for a local pub who were looking for daytime bar staff. As they closed at 3pm,this was ideal as I would still be available for the school runs.

I thoroughly enjoyed the job, meeting people and chatting with them and regaining a sense of independence and achievement, in that I was taking some of the financial pressure off my husband.

I only worked 3 lunchtimes per week but soon I developed pain in my knees, my elbows and then my fingers, as well as the back and neck pain and I was utterly exhausted. I used to compare myself to other Mums who all seemed to have so much more energy than me, even though they were working longer hours and, I felt, carrying out more activities with their children.

I saw my GP about my noisy knees (they sound like I'm crunching on dry rice crispies) and he sent me for an x-ray before referring me to a rheumatologist.

I saw the rheumatologist a few months later and after approximately 40 minutes of taking history as well as poking me in various places, all of which really hurt and which I later discovered were the Fibromyalgia pressure points, he referred me for more tests but indicated that he thought I had Fibromyalgia. Six months later and after a barrage of tests etc the diagnosis of Fibromyalgia was confirmed.

My overriding feeling was one of relief - finally having an answer for the exhaustion, the chronic pain, IBS, the poor sleep, headaches, lack of energy etc.

Ten months later, I am still working on the acceptance and reality of my diagnosis. I am yet to learn how to pace myself and not carry on full steam ahead doing things that I know will result in a flare up (pain and exhaustion that can last up to a week after over-exertion).

I know that many people (including my wonderful son) struggle with acceptance by others when they have an invisible disability.

I am still working on accepting the new me, I am struggling not to judge myself, push myself too hard, as I feel like I "should" be able to do more. Hopefully, I will soon accept my new reality.