Julie's handmade jewellery in support of FMA UK
- Category: General Information
- Published on Monday, 23 January 2017 16:20
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Julie Herbert is making fantastic handmade jewellery and gifts while raising funds for FMA UK. Julie told us why she decided to raise funds for FMA UK through making jewellery:
‘’I started to raise funds for FMA UK because I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome a few years ago now. It all started eight years ago when I had my daughter. It was my first baby yet the labour and birth wasn’t how it was planned (never is, is it?). The birth was quick for my first baby, a few things went wrong. I wasn’t allowed any pain relief or gas and air as they said I was too far gone. I ended up with a third degree tear, which I went into surgery after the birth. Yet what we didn’t know at the time was due to everything being quick and I feel a few mistakes on the midwives side my coccyx bone had moved to the left hand side. This I noticed a few weeks after recovery that I still could not sit properly yet it wasn’t the tear or stitches that we’re hurting me. Doctors said as everything is soft due to delivery it will all correct itself within time.
Unfortunately this never happened, Doctors dismissed my concerns for months yet I kept on complaining. I was in severe pain with my coccyx, I couldn’t sit for long or sit properly I had to sit on an angle just to relieve some of the pain I was experiencing. I couldn’t stand for long or lay in bed without rolling over with tears rolling down my face. I carried on at the Doctors but as my third degree tear hadn’t healed correctly I was back in surgery to remove excess scar tissue. This meant my coccyx problem was dismissed even longer until I was fully recovered again.
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Years went by in agony, the Doctors finally referred me to hospital to see a bone specialist. He confirmed that my coccyx bone had indeed protruded to the left which he could feel through the skin. Every touch was agony for me. He decided to see if he could manipulate my coccyx back into place but as this would be too painful I was back in surgery to see if it would work. In the recovery room the surgeon told me as the bone was left too long in the wrong place it was it fused in that position and could not be manipulated back into place. The only option was to remove it all with a year’s recovery time. My surgery time was cancelled time and time again due to different reasons by the hospital. I started to experience lower back pain that would last hours so I was in agony with my back and coccyx pain. Eventually years after the birth of my daughter I was in surgery to remove my coccyx. Surgery went well but the years recovery was horrendous. I was in agony again due to the surgery, which takes long to heal. I couldn’t walk and looking after my daughter became difficult but I did as much as I could. The lower back pain continued but I put this down to recovering. After the years recovery my back pain continued, I believed after the recovery the pain would subside. My back pain was just as much agony as my coccyx pain, I would cry with the pain, unable to walk or move in fear of making the pain worse. After a year and a half, I was referred back to the bone surgeon who dismissed the back pain had anything to do with the surgery and didn’t want to see me again, I felt I was on my own.
Fast forward to New Year’s Eve around three years ago all day I noticed my back pain was getting worse and worse, I was in absolute agony. I was withering in pain to the point where no pain killers would work. I know with New Year’s Eve there would be no Doctors around so I tried to put up with it, the end came where I could not take the pain no longer. I felt like I was in labour again, I begged my Husband to ring NHS Direct who put me in touch with a Walk in Clinic, they told me to go there right away. 11 o’clock I was wheeled into the clinic as I couldn’t walk or speak with the pain. I was diagnosed with server lung infection and to go to hospital. 12am I was admitted and put on a high dose antibiotic drip. After two weeks in hospital and different scans and tests they said I didn’t have a lung infection, the Doctor at the Walk in Clinic got it wrong. No one knew why I was in so much pain. I had six rounds of acupuncture in my back to ease the pain that didn’t work. They put me on every high pain killer they could think of including oral morph every four hours yet nothing eased the pain. They even put me on that much mediation they overdosed me for six hours, no one could wake me.
I wasn’t in the same pain as I was first admitted with but the pain ever eased to where I could walk without crying. In the end the Doctors bought in a Rheumatologist to see me, she was the last resort. I went through more tests, in the end she diagnosed Fibromyalgia and Chronic Fatigue Syndrome. After 3 weeks in hospital I was allowed home with physio (nothing worked in physio) or the Pain Clinic. It was good to finally have a name to something I was experiencing for so long. My pain is primarily in my lower back where the pain slides up my spine and into both shoulders. I can experience pain in my arms but mostly my back.
The first six months of being at home I had to get a neighbour to take my daughter to and from school as I couldn’t walk. Unfortunately my neighbour could no longer take my daughter. I had to take her myself whether I was better or not. It was a difficult time.
Now I am on a range of high medication including a morphine patch on my arm, these come with a range of side effects that can be just as bad as Fibromyalgia itself. The medication does not always take the pain away and when the pain is strong it doesn’t touch it. I cannot do everything I want to do with my daughter in terms of playing with her as my back cannot cope. I cannot stand or walk long so I have a wheelchair. Symptoms over time has got worse but I am trying to cope as best as I can. At the time when I was diagnosed I knew nothing about Fibromyalgia or didn’t know anyone else with it or anyone who knew about it. I get the odd person who knows about Fibromyalgia but not much. People see me walking with a crutch but properly look and think ‘there is nothing physically wrong with her, so what’s wrong?’. invisible illnesses are hard to get across to people but they don’t see what I or my family go through on a day to day basis.
As I cannot work in employment I wanted to work from home, I set up my own jewellery business. This is where my Fibromyalgia Awareness jewellery was founded for those who have the illness and too want to raise awareness. With the Fibromyalgia jewellery I make, with the sales I donate 10% to FMA UK to give my thanks and support back.
With everything that has happened to me I looked on book sites to see if anyone else with the condition published a book. All I found was self-help books so I decided to try and write a book myself on my struggles with Fibromyalgia (but I am finding this difficult to do but would love to publish it myself one day).
Living with Fibromyalgia and Chronic Fatigue Syndrome is difficult, not only with the pain but knowing I still cannot play with my daughter like other parents can. My husband has to help me a lot, this I can find hard as I am someone who wants to do it myself even though I know I will suffer at the end. I have learnt to accept help when I need it and not to push myself. I have and know my limits but can still do too much without realising it until it’s too late.
In time I would like to continue raising funds for Fibromyalgia that can help suffers like myself. Raising awareness of something like Fibromyalgia is priceless. I have sold more Fibromyalgia Awareness jewellery that I need to give my donation to my JustGiving page, which I will do so’’.
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To donate visit Julie’s JustGiving page: