May the 12th is International Fibromyalgia Awareness Day and today, as part of that, I want to open up and be honest with you about how this illness has affected me. If you are a regular reader of this blog, you will know that I generally adopt a positive attitude towards life with fibromyalgia. I take each day as it comes, choose not to focus on my symptoms and instead think about the decisions I can make each day to feel as well as possible. This is how I cope living with fibromyalgia and I do think it is important to tackle each day this way if you want to live well with the condition. However, I also think it is important that people realise the full impact that this cruel illness can have on someone’s life. So I am stepping away from my usual type of post to instead take a frank look at how fibromyalgia has changed my life and discuss the things I miss the most as a result of this illness. I am going to try my best to avoid sounding as though I am complaining because I don’t feel as though negativity does anyone any good. I am simply going to share the truth and state the facts.
Fibromyalgia is something that crept up on me slowly and has steadily, over the course of a couple years, become more debilitating for me. I used to pride myself on the fact that I could do so much despite this illness. Unfortunately, pushing on through like that made my symptoms progressively worse. Fibromyalgia is definitely a condition that affects people differently; no two people suffer exactly the same. Some will find that they can function relatively normally. For others, fibromyalgia is a severely debilitating illness that impacts every aspect of their life. For many, like me, the illness will become progressively worse. I think it bears reminding that if you know someone with fibromyalgia and their symptoms are mild, it does not mean that someone else just needs to “suck it up and deal with it better”. We are all individual.
People with fibromyalgia are extremely resilient. We put on a brave face and say we are doing “fine” even when we are not. This can lead people to believe that it’s not that big of a deal. The way I see it is we have two choices: complain and be miserable or smile and get on with life as best as we can. I know I, and the majority, will choose the latter. Unfortunately the truth is that, even if we look okay or are managing to do what we want, it doesn’t mean that we are not suffering from symptoms. The vast majority will be in pain every single day. A good day just means the pain is manageable. For the most part, as soon as we get home, the mask comes off and we collapse! Often if we push ourselves to do something we will “pay for it” for days to come and will see a surge in horrible symptoms. Searing, intense pain from head-to-toe. Fatigue as though you have been hit by a bus. This is not just a case of being tired. The fatigue you can get with fibromyalgia makes it difficult to even function. At my worst, my husband needed to help me with everything: getting out of bed, dressing myself, washing myself. I literally spent all of my time in bed with the exception of going to the bathroom.
Thankfully, with help from Vital Plan, I am learning to make the changes I need to in order to get better control of my illness. I feel as though I still have a long way to go and, unfortunately, my fibromyalgia continues to restrict what I am able to do. However I am also, thankfully, far from the days of being completely bed bound by my illness. This doesn’t mean I am free of that forever though. If I do not look after myself I could very well end up back there. It also doesn’t mean that I no longer have bad days, I do. Flare ups still happen but I am doing my best to try and prevent them from happening as often.
In my attempt to feel as well as I possibly can, I have had to make a lot of sacrifices and changes to my life. Fibromyalgia has cruelly robbed me of many things and here’s just a few things that I miss most:
I think this would top everyone’s list. These days everything is about planning, planning and more planning. Before, life used to be about making random decisions: going out shopping, going out for a meal or taking a trip to the cinema. If I got bored, it was simply a case of “what should we do?” and off we would go and do something. Anything. Now I no longer have that option. I have limited energy each day and also need to factor a lot of rest into my day. Every single thing that I do drains me of energy to some degree. Simple tasks like washing myself and getting dressed and ready for the day are tiring. Travelling in the car is exhausting. I sadly do not have the energy to spontaneously decide to do something on a regular day. It has to be planned. I need to spend as much time as possible resting (not only on the day, but during the days previous) so that hopefully I might feel well enough to do whatever it is I have planned. Even then, sometimes I am still too unwell to go.
This ties in with the above. With every decision I make, my health factors into it. I have to think about whether I would manage to physically do something, the impact it will have on me and if it is actually worth me doing. I have to think about “damage control” and plan rest so that I do not experience a flare up of symptoms. Activities generally need to be modified so they are less intense so that I can manage them better. Tasks need to be broken down into smaller, more manageable chunks. I often have to say “no”. I miss being care-free and not having to think about my health so much.
Eating Whatever I Want Without Repercussions
I realise that this is a superficial one because most of the time I do not feel limited in what I can eat. In fact, I eat a wider variety of foods now. However, every now and again, when I watch people tuck into something I used to enjoy I find myself wishing I could eat whatever the hell I wanted to without feeling terrible for it. As examples, I have given up wheat, dairy and cut out refined sugar (apart from the occasional treat, such a a couple of squares of dark chocolate). If I eat these foods now (or eat too much sugar) I feel awful for it and my fibromyalgia flares up.
At the moment, I am off work on long-term sick leave. This was a very difficult adjustment for me but I am unfortunately not well enough to work at the moment. I am learning that I need to put my health first but that doesn’t make it any easier to come to terms with. Fibromyalgia has robbed me of my ability to work full-time and time will be the deciding factor as to whether I will be able to return to my current job role on a part-time basis. It is something that is completely out with my control.
Having My Independence
Day-to-day I need a lot of help. I have limited energy in a day and struggle with sitting upright or standing still for any length of time. I find it difficult to keep on top of house work and some tasks cause me to be in a lot of pain. Cooking is something I find exhausting. I rely on my mum and husband for so much that I would be lost without them.
I love travelling and exploring new places but this is something that has had to be sidelined for now. Travelling is sadly too exhausting for me at this point in time.
Using my DSLR Without Thought
I used to take my DSLR camera with me everywhere. Photography is my passion. However, lugging a heavy camera and lens around with me is not something I can do on a daily basis as it causes me pain. More often than not I take photographs with my iPhone these days. It’s just not the same.
Each Day Being Different
As I work towards feeling as well as I possibly can, each day seems to have blurred into one. There is a lot of sameness, which can frustrate me at times. However, I am hopeful that I will continue to improve and get back to a new kind of normal. One where I can do more of the things I want to and introduce more variety into my life.
My life has undoubtedly changed considerably due to fibromyalgia. I have been forced to make decisions I otherwise would not have chosen to make. I have had to give up a lot and life now has to be taken at a much slower pace. Planning has become essential to feeling as well as possible. Like I said above, I am very resilient and I choose to see the positives in my situation. After all, the only other option is to be miserable! I’m not saying I am happy and positive all of the time and I of course miss my “old life”! However, I choose to make the most out of what I do have. I am very fortunate to have a lovely home, amazing family and I am exploring new passions and finding different ways to enjoy life. Life is what we choose to make of it and in order to be happy, I have had to lower the expectations I have of myself. I am continuing to find new ways to be productive and I am finding a new “purpose”. Like I said at the beginning, I take each day as it comes and make decisions that help me to feel as well as possible. Life with fibromyalgia is certainly challenging but I am dealing with it as best as I can.
If you want to read more about what fibromyalgia is and what the symptoms of fibromyalgia are, please read this page.
Please help to create awareness by sharing your own story in the comments below. What do you miss the most?