When we first get diagnosed it is a huge relief because we are no longer crazy hypochondriacs to our Family and friends. Our expectations then, are that our GP is going to give us a miracle pain killer and laden us with heaps of information about the condition, we will go away feeling relieved and supported.
Sorry to disappoint, but as there is no cause or cure our GP’s can only prescribe what has been prescribed to thousands of us before and hope you get some temporary relief. They can only prescribe largely ineffective antidepressants and opiates, these drug us up and cause horrible side effects and with prolonged use, slowly rot our organs, leaving us in more pain and discomfort, leading to taking a larger cocktail of drugs to relieve the side effects. Suddenly, you are dependent on them with no support. We are then left isolated with our conditions because no one knows what to do with us.
At this point we become desperate and we will try anything to get some relief. Our condition has consumed us, we have lost our friends because we are either frequently cancelling our arrangements with them, or we are unable to keep up with the lifestyle we once had. Those of us with jobs are finding it difficult to recover for the next day and must make serious decisions about our capability and young parents get no respite at all. The continuous long-term stress exaggerates our symptoms and then begins to affect our mental health and relationships. In fact, someone worded it brilliantly the other day and said “it’s like living in a parallel world and you are watching everyone else going through life while time has stood still for you trapped in your body”. You are a victim, a sufferer, you are negative, you love to moan because it makes you feel better. But does it? And does it really have to be that way? No, it doesn’t! There is another way if you choose to take the challenge.
When the idea about starting the group first came about, I was in a very dark place. However, the only way I could see a support group for us to work was if we made it positive. Everything had to be positive, the group meetings, the Facebook page, the rules, the members, the future, everything.
I needed to become positive! How did I get out of victim/ sufferer mode? Instead of looking at everything with dread and fear, I looked at it as putting pieces of a puzzle together, like research. I had to distance my negativity and almost get excited that I found a piece of the puzzle. Bear in mind that it is a huge puzzle!
First, I had to mourn the loss of my old self, this was really hard to do. I had 24 weeks of counselling that helped me through this process. This was not the easiest of processes as I had lost my identity and was consumed by Fibromyalgia so I had to look at reinventing myself on the things that I could do.
What could I do? What do I enjoy? What am I passionate about? Well I love helping people. I love to organise events. I loved exercise. These are all positive experiences and I just needed to adapt my experience and knowledge to become the new me. But how can I do this when I am in the biggest flare of my life.
Through the process of acceptance and loss I could identify my limitations. We are all different and our limitations can vary from day to day. I learned to listen to what my body was telling me and not to feel guilty if I needed to rest, no matter how long it took. I tried to stop boom and busting and paced myself instead, which is hard to do when you have responsibilities. It’s all about looking at your life and changing the stressful bits to help you. I could then plan what I needed to do and understanding that exceeding these would have consequences over the next few days. I knew if I had a busy day on a Monday that I would not have anything planned for the following 2 to 3 days just in case. It is all about forward planning and being organised.
Secondly, I had to lead by example and build my fitness up again. Now this is one of the hardest things to do for anyone, but then with a chronic illness as well most of us would just lock the door and go back to bed! Many sufferers especially if they are in ‘victim mode’ will deny any sort of exercise whether it be a gentle walk or a yoga class. This is the worst thing that you can do. The less you use the muscles in your body the more they waste away, the more pain you are in. The higher the risk of trips and falls. Many of us sit for many hours a day, which in turn puts more stress and pain on your movements when you need to get up out of your chair or bed. To add to the stigma of exercise many sufferers also think that they are going to lose their benefits because they are seen to be walking. This I can assure you is not the case. I have spoken to a manager at the DWP as I was concerned that sufferers are denying themselves vital care to maintain their symptoms. The DWP have reassured me that they do not have the funding to go spying on everyone and if gentle exercise is a key part of maintaining their symptoms then they should be encouraged to do it.
The hardest thing for me was that I had to realise that I couldn’t do the things I was doing before but my brain was geared to boxing training. Luckily, I found a brilliant personal trainer at the gym I go to who sat and listened to all my symptoms, concerns, issues about post training malaise etc, etc. He was so patient and wrote me a programme that was so basic, it was like a warm up in my previous life. I wouldn’t normally get out of bed for this. I wasn’t in the gym half an hour! After 3 months at this level I called the PT and arranged to improve my level and we did this a couple of times and very slowly my body adjusted. You see it’s like having an alien inside of you. You cannot wake the alien up otherwise it will punish you with pain and fatigue so you must tip toe so it doesn’t notice you and don’t wake it up. Sadly, I had a relapse and I ended up back at square one for over a year and it was even harder to start again. This is another acceptance that our day to day health is going to be like a roller coaster and we will hit rock bottom but the only way is up from there! I now try to swim twice a week and some days I can do 2 lengths and others a bit more. The goal is to walk through the doors and everything else is a bonus. I reward myself with a spa afterwards to warm the muscles to reduce the risk post swim malaise.
Thirdly, I had to reduce the intake of sugar as I was on self-destruct mode and piling in hundreds of calories of chocolate, biscuits and cake every day. I piled on 3 stone in a year and was dependant on my mobility scooter because of pain and I knew that my symptoms were exagerated by this but when you fall off the wagon nothing shocks you enough to get back on it again. It must be up to you to want it to achieve it. The way I have changed my eating habits is by learning how the gut works and what sugar does to you.
After listening to specialists, nutritionists and sufferers there is a way to improve our symptoms and it all starts in the gut! Yes, the gut! The saying you are what you eat is very poignant. We were made to eat meat, fish and vegetables, plus natural foraging. Today, we are continuously being encouraged to buy processed foods and confectionaries that have high contents of sugars and preservatives. But while this is making billions of pounds for the manufacturers no one is going to challenge this. Obesity rates are sky high along with diabetes and this will continue, as the foods on the shelves are cheaper than natural, clean foods. Some of our members are now on a high fat low carb diet and they are seeing some promising improvements with fatigue, fibro fog and energy.
Sugar is more addictive than heroin and causes inflammation which in turn causes pain and with the side effects of the pain killers being pain and weight gain, sufferers blame the side effects of the drugs when it is highly probable that they are helping it with a big slice of cake and a couple of bars of chocolate a day. On top of that you are feeding the bad bacteria in the gut which causes bloating and fatigue along with a list of other nasty conditions such as IBS. In addition, the long-term stress you are putting your body through increases the symptoms of Fibro Fog as your brain’s functionality is forced to reduce.
At the end of the day, if you didn’t take the ineffective drugs, there would be no side effects to blame for the sugar you consume which causes the inflammation, pain and fatigue. You would still be in pain but it would be more manageable without the long-term addiction of the drugs rotting your organs. You would be more active, keeping your muscles strong and flexible, reducing pain levels and the risk of trips and falls. Being more active improves your mental health and you will almost certainly be on the road to positivity, acceptance and self-management.
Are you ready for this?