After sharing my story last week I got a lot of kind messages of support and others telling me about their struggles with many different illnesses. I decided to start the Mental Wellness Monday Share to help share peoples stories and let people know that they are not alone in the world.
This week I have the inspiring story of a young lady who has not had an easy time with her illness. It took Yolandé a long time to get the doctors on her side but this has not stopped her in life. Here is her inspiring story which I hope will help many of you know that you are never alone. Check out her Instagram page: Sheer Empowderment
My journey with fibromyalgia
A few months ago I was diagnosed with fibromyalgia. Even though the diagnosis happened quite recently, I have been dealing with the symptoms for as long as I can remember. As a little girl, the doctors explained to my parents that it was just growing-pains and that eventually it will blow over. Well, I’m 25 now, and still waiting for my so-called growing pains to “blow over”.
Fibromyalgia is characterised by chronic, widespread muscular and joint pain. This is often accompanied by chronic fatigue as well as issues related to sleep, moods, concentration and memory. Because there are, to date, no physical blood tests that can be done to make a diagnosis, the word fibromyalgia seems to have become somewhat of a dirty word that some medical practitioners tip-toe around. This leaves the patient with nothing but questions, a feeling of hopelessness and a handful of (even more) painkillers. Yes, there is no cure for fibromyalgia but there are very effective treatment plans that can be put into place to drastically improve your quality of life despite living with fibromyalgia.
The most frustrating and disempowering part of my journey with chronic pain was getting diagnosed. It took years, endless bloodtests, tender-point tests and a very long list of different medical practitioners. From multiple GP’s, to psychiatrists and physicians. It’s a long and exhausting path but don’t give up! Even when the doctors do…
There were and still are days (although they happen a bit less often now) where my body is in so much pain and so stiff that I physically cannot move until I get my medication and warm my muscles up with microwavable beanbags. There are nights when the pain in my legs are so bad that I cannot fall asleep. Simple things like brushing my hair, climbing in or out of the bath, driving or even just being touched or hugged become a challenge on my bad days. The tricky thing about fibromyalgia is that the flare-ups (periods/episodes of intense pain) can be triggered by multiple factors. Stress, climate changes, poor sleep, certain foods, hormonal changes etc, etc, etc. You start to learn what your triggers are and either try to avoid them or if you can’t (ie hormones and weather) you at least know what’s coming. Because I also have endometriosis, it is a bit of a vicious cycle with the one condition feeding off of the other.
Mood changes are also associated with fibromyalgia. It often leads to feelings of anxiety, helplessness and depression which can, in turn, trigger another flare-up. This is the kind of knowledge and understanding that usually only comes after we know what we are dealing with. Without a diagnosis – you have no answers and no treatment plan. You do not know what to avoid, what to focus on and what to expect. It’s a very lonely space to be in and extremely difficult to explain to the people around you.
My current treatment plan enables me to live a normal life. I am able to study, work and reach for my dreams because I know my limitations during flares and I (finally) understand what my body needs from me. I have had to make a few changes to my mindset and lifestyle which I will elaborate on below. This year I am completing my Masters in Industrial and Organisational Psychology and lecturing part-time. I will also be celebrating my first anniversary with my husband who completely understands that some days we will be having take-aways and lying on the couch because cooking or going out just isn’t possible on a “fibro-day”.
- What have you learnt through this journey?
So often, we really are our own worst enemies. I can be extremely hard on myself and tend to push myself to the limit. It’s just who I am. But I have learnt that it is okay to take time out for yourself, actually it’s a necessity if you want to be the best version of yourself. Taking a night or a weekend off does not mean you are lazy or aren’t worthy of your dreams. It means you have learnt to listen to your body when it needs a break. It means that you chose to take a day or a few hours off instead of being bed-ridden for the next week because you pushed your body past its limits. I have also learnt that my aspirations and achievements are literally worthless if I don’t have my health– so my priorities have definitely changed.
I also realise that some people might never understand what I’m going through and actually that’s okay. I don’t wish it upon anyone to know the feeling. So certain comments and requests may come across as insensitive, but I don’t let them affect me because I realise its coming from a place of lack of awareness. Fibromyalgia has a long way to go in terms of awareness and that’s why articles like these are so important.
- What is the hardest part of living with your fibromyalgia?
I think the biggest challenge for me is the fact that I cannot always predict when I will be having a good or a bad day. That means it’s difficult for me to, for example, stick to a set time to go to the gym or know which days I’ll be able to study without with ‘fibro fog’. So as much as I thrive when I can plan my schedule to a T – that simply isn’t possible and I have had to learn to be more adaptable. Another challenge is the fact that fibromyalgia is an invisible illness. People cannot see it, so for many it simply doesn’t exist.
- What makes the hard days better? Any home remedies, hobbies, self care tips
There are so many! Keep in mind what works for me might not work for everyone but it’s definitely worth giving it a try. A few things that really help me:
-Multiple microwavable beanbags (I think I own more of these than shoes)
-Epsom salt bath (hot water)
-Magnesium and zinc supplements (I use Ultimag tablets from clicks or dischem)
-Sometimes I find it helps to limit gluten in my diet
-The occasional painkillers (try to avoid habit-forming ingredients like codeine as much as possible – the last thing you need is pain from withdrawal)
-Sticking to a sleep schedule (this is very important)
-Exercise (But like I said, be flexible with when you exercise – you want to exercise when you are not in pain. Otherwise you can stick to gentle stretching)
-I was prescribed chronic medication so I set reminders on my phone so that I remember to take these religiously.
-Taking time-outs at least once a week. You cannot expect your body to function for 7 days a week if you are working all day and during the evenings. Either take at least a full day off over the weekend where you do not touch work, or give yourself evenings off from work.
– I have recently started an instagram account called Sheer Empowderment focussing on empowerment and cosmetics. This gives me a creative outlet and also provides me with a platform to empower others with the things I have learnt through my journey.
- If you could give the you who started this process of diagnosis some advice what would you say?
If I knew what a difficult diagnosis it was to make right from the get-go I think I might have been less frustrated by the process. But the most important thing is that you deserve answers. Maybe you don’t have fibromyalgia. Maybe it is something else with similar symptoms. Whatever the case, keep fighting until you know what it is you’re dealing with and how you can treat it. Diagnosis can become a very expensive exercise which also extends the time it takes to get answers and in some cases even make it impossible. This is because more often than not you are sent from one doctor or specialist to the next. I would advise that in the meantime you start focusing on basic self-care tips which will help no matter the diagnosis (getting enough sleep, a healthy diet, vitamins and supplements and putting processes into place to reduce your level of stress). And whatever you do, don’t accept the answer of “it will blow over, it’s just stress, here are some more painkillers”. This is your life, your body – and this is your fight.