My Journey with Fibromyalgia
I have been an athletic person my whole life. I was a speed swimmer from a young age and went on to compete for national synchronised swimming, training hard daily.
I went on to have two children and we always had active lives with my husband Stuart; we loved to kayak, rock climb, swim, ride our bikes. We were always outside enjoying our hobbies as a family. I was also a part-time gardener.
In March 2010 my parents offered to have our children for a week so Stuart and I could have a holiday; just the two of us. We were over the moon with excitement, the children were 6 and 10 years old so I felt happy, but worried to leave them. Also, I couldn’t wait to have some alone time with my hard-working husband (who travels and works long hours). While we were in Egypt we both caught tummy bugs and we were very poorly. Although we enjoyed our holiday, it went on to be the worst decision of our lives. We returned home, our tummies not quite right but we just got on with life. I was training for a half marathon, running every other day, working and being mummy to my gorgeous boys. Still loving the life we had.
October 3rd 2010 – I ran my usual seven miles.
October 4th 2010 – I woke up and went to stand to get out of bed and something was very wrong with my knees. The pain was so strong. Like a blade had gone through my knees. I thought maybe I had overdone it with running, so I tried to take it really easy for a few weeks. As the weeks passed, the pain was unbearable. I would wake up screaming, crying in pain. The feeling of my knees snapping out in the opposite direction. Even the duvet felt too heavy, like it was pushing my knees into the mattress with twisting, stabbing pains.
Quickly my life changed from being one of the most active of all my friends and family, to being in a wheelchair depending on people to take me out.
The pain spread to my ankles, then my toes. I had test after test, scan after scan at private hospitals. It took over a year for anyone to work out what was wrong with me. It was incredibly scary and stressful. At one stage they thought I had arthritis and I got prescribed tablets to stop the arthritis spreading or progressing. I stayed on them for six months. The pain soon spread to my elbows. Then wrists and fingers. It was such a bone crushing, stabbing, dull, deep pulsating pain. Pain that I wouldn’t wish on anyone. The physician decided that it couldn’t be arthritis as it was spreading and I was on tablets to stop that. I decided to go to a tropical disease clinic in London. It was there that I was told I had Fibromyalgia, probably triggered from the tummy bug I had caught in Egypt.
At first I thought great – after all these years of not knowing what I had, it was now diagnosed; but what is Fibromyalgia and how can I get rid of it, so I can start to feel myself again!? There is no cure. Yes, there are many different drugs and trials, diets, etc. out there, but no one really knows of a cure. It is what works for the individual. I tried many different prescribed drugs, diets, Cognitive Behavioural Therapy, pain management, acupuncture and more tests after tests. Every drug I took had consequences.
Three years of hell and pain, like I could never describe to anyone. It was so chronic sometimes, crying was even too painful. Apart from the chronic pain in all my joints and neck, there were other parts to this wonderful illness that were creeping in steadily. Heightened senses. Loud noise, such as people talking loudly, would hurt my head so much or send me into a zone of just being able to cope. I would get irritable, panic, and lose concentration on whatever I was trying to do. Bright lights would hurt my head and burn my eyes, so driving at night was a big no-no. Most days my eyes would feel like I had grit under my eyelids. They were so itchy and sensitive. My concentration span is so minimal, I have to do things in 10-20 minute blocks, because of the brain fog. Brain fog is just so frustrating and irritating. I can be so desperately wanting to do something and my brain just won’t let me. These are just a few of the many symptoms I get with Fibromyalgia.
How did I feel in myself – lost, so lost. In my mind I lost almost everything that represents me and my character and me as a whole. I could no longer walk my son to school. Sometimes, I just couldn’t do even the simplest of things my children wanted me to play or do; the pain was so intense. I was so exhausted that physically and mentally, it was impossible. For a mum to not be a mum to her children is heart-breaking; even if your child is being understanding and kind, you still feel awful. Like a failure. We no longer had our adventures. Weekends turned into home days or me sitting in my wheelchair watching my family do our activities that I would have once joined in with. It was so upsetting to watch and to hear about.
Getting a wheelchair for me was a huge barrier to get over. I knew I had to have one but I didn’t want to accept that I couldn’t live without one. I felt embarrassed to see people while I was in it. I didn’t want to see people’s reactions or have to answer all their constant questions. I felt stupid because in my mind I was fit and healthy, but in my body I was a frail old woman. I definitely didn’t want my children to have to push me around. It meant I wasn't able to hold my husband’s hand.
I felt so much guilt towards my husband. I didn’t want him to have to put up with my health and the way our lives had changed, but he’s been my absolute rock through all the hard times, he truly is an amazing man.
Very quickly I worked out that days had to consist of small tasks and loads of rests. Most days just resting because the pain was too much.
Over the years I have self taught different crafts to do on good days, like knitting and sewing in the early days. As I grew more able to get around a bit, I did short courses that lasted an hour. I learnt flower arranging, mosaic and decoration making. I found that finding new interests and new things that I could do on good days kept me positive, motivated and gave me some satisfaction that I’d achieved something. It was enjoyable, and something I could do with my friends or pick up as and when I was able. Every day somewhere different would hurt more; it gave me more options.
I have been very lucky to have some truly great friends and parents. Having their support and understanding has been so important in my daily life. Getting me out of the house in my chair has helped so much, as I have spent a lot of time on my own at home. Helping me out with the children too, playing in a park with them or giving me a break was so important to my recovery.
My husband works long hours and travels, so I have no choice but to cope on my own with the children. The first three years were so incredibly hard. It certainly makes you look and realise who your true friends and family are.
Those years of my life as a mummy are gone. I can never get them back and relive what I’ve missed out on and it’s so heart breaking.
I have a completely different perspective on life now. I never take things that I can do for granted and every new thing I can do I feel proud and excited.
I take no medication. I take strong painkillers if I am desperate, but mainly I prefer not to take anything so I can monitor my pain. I’ve learnt to know the signs of when I have to lie down before I can’t walk for the rest of the day or week. I do little and often rest. I’ve learnt every thing I do has a consequence in some way, whether it’s exhaustion or chronic pain. So I weigh up what’s important to me to do daily. If there is anything big for me coming up, I rest loads for a week before and know that after the event I will rest for the next week or two. Knowing and accepting that this is the way it has to be for me to be able to live daily with this condition is half the battle.
Exercise wise, I started from the bare minimum. On a good day I would go for a swim sometimes, only managing one length with either arms only or legs only. This was hugely frustrating for me and at times I would drag myself out of the pool in tears through pain or frustration; but I didn’t push myself and listened to my body. Gradually, over the months and years I have built it up extremely slowly. I have an old dog that needs walking twice a day and I’ve been able to build up the short walks.
I have been taking Pilates classes since June 2015. At first I could manage about a quarter of the class; I have now built up to going four times a week, and for me it’s been the best thing for my condition. I’ve really noticed a difference.
I can also now cycle for short distances, which I never would have been able to do in the first three years of my illness. I’ve been back on the kayak and sometimes rock climbing – at a push (there are consequence for climbing, even for just a few minutes, but I enjoy it so much).
Whilst it is still incredibly painful to walk, I have been able to walk short distances now and again, which has been an incredible feeling of freedom. I still use my wheelchair for distances I can't manage.
I still get huge setbacks if I do anything out of my routine, sometimes for 2-4 weeks, which is so frustrating and upsetting. However, if I start from the bottom, rest loads, am patient, am mindful, and concentrate on healing and slowly build up my routine again, I get myself on a level again.
What’s kept me going? My children. My husband. My motivation for life. I’m so determined to get fit and well.
I’m continually redesigning my life. Working out new ways to enjoy it, learning new skills, new interests, new exercises that I’m able to do. I started listening to my body in that sense, discovering my limits and strengths.
I have always thrived on exercise of any form. I love it. I have always been determined to do everything to the best of my ability and I refuse to get fat and mope around – it's not me. Yes, it would be so easy to feel sorry for myself and do nothing but I truly believe exercise is what’s getting me through this, even at its lowest form. Stretches or little movements. I do something.
I eat healthily. I’m not on any funny diets or supplements or vitamins. I just eat a balanced diet.
I have not written this journey for sympathy. I’ve written it to share my journey and hope that people who have no clue about Fibromyalgia have a better understanding. For those who have Fibromyalgia, I hope they will know they are not suffering alone with this invisible illness.