Fibro Warrior Wednesday – Clare Palmer

I was diagnosed 2 years ago, at the age of 28 by a Rheumatologist.

 I started feeling pain and tiredness after the birth of my second son, who is now three.  I’d had phisio on my knee and back several years ago, I GP thought it would be worth seeing a rheumatologist.  It was there that I was diagnosed with hyper mobility syndrome and Fibromyalgia.

I had already given up work by that point. I was a hairdresser, it was more convenient for me to stay at home after the birth of our first son (now 7).  But also, because it was aggravating a back injury and I was having to rely on too many painkillers to get me through the day.  Looking back, it was probably my back injury in 2003 that triggered my illness.

I had two children, now three and seven, I wasn’t married to their father at the time, but we happily tied the knot in October 2012.

I hid it for a while, as I didn’t want any fuss, but eventually I felt they needed to know.

Most were supportive, others not so much.  In fact, I’d go as far to say, one particular family member was jealous (I know right?!!).  She hated that the attention was on me, just for a moment.  She’d talk behind my back and discredit my illness, it was very hurtful.  We no longer speak, I don’t have time for negative people anymore.  It’s too draining.
[Tweet “I initially hid my illness from my family, I didn’t want any fuss. via @claros00”]

In some ways it’s changed for the better.  I’ve learned what’s important in life; I realize that worrying doesn’t change a thing.  I’ve also started to appreciate the smaller things. 

In other ways, it’s been hard.  I miss the healthier me terribly.  I often think of the phrase… “You don’t know what you got till it’s gone.”

It’s push me to my limit and beyond; it’s a very scary place to be.  I live in fear that it will become worse.  I’m a strong person but I wonder how I cope.

[Tweet “I’m a strong person but I wonder how I cope. via @claros00”]

Having young children I don’t get much time to rest.  I probably could take more shortcuts and accept more help but I don’t want to compromise my parenting because of my illness.  I want to be the best person, mother, and wife I can be.  In some ways it makes my life incredibly hard; other times, I think they are the only things keeping me going.

I have hypermobility syndrome, basically means that the muscle fibers are far too weak and flexible.  It causes and stability around the joints, leading to pain, inflammation, trigger points (knots), muscle fatigue, and tears in the muscle fibers.  It means that if I have tendinitis in the knee, for example, I want just feel it there.  My knee pain will flare up pain elsewhere in my body even though there’s no reason for it.  I have a disproportionate reaction to pain, so a niggle will feel like agony.  This makes improving my hypermobility syndrome very difficult.  I have recently discovered that I have Chronic Fatigue Syndrome, which doesn’t help either!  Visio will improve my hypermobility, but it will trigger excruciating pain and debilitating fatigue.  I’ve yet to find the right balance.

Rest tells me recover from a bad flareup (when my symptoms become intensified for several days/weeks/months).  Pacing myself for not pushing beyond my limits fixed the frequency of flareups less.  Magnesium supplements have helped a little with the muscle pain.  Vitamin D supplements have helped a little with fatigue.  Cutting out caffeine (apart from one cup of tea in the morning to help me get going!)  has improved sleep.  Pregabalin (75 MG at night) has helped me sleep.  Apart from that, I found very little else helps.

What is the best advice you’ve received regarding Fibromyalgia?
I can’t point to one piece of advice.  But collectively the most helpful in understanding people have been my Twitter and instagram friends, most of whom are dealing with their own chronic illnesses.
[Tweet “The most helpful and understanding have been my twitter friends @claros00”]

Tell us about your YouTube Channel and what you are hoping to do there?
I have a YouTube channel (Claros1983) where I write and sing my music.  It’s where I can truly express myself.  I have my voice can bring a moment of emotion to the person listening, and allow them to escape whatever it is they’re going through, even just for a minute or two.

 I don’t follow advice lightly, and quite stubborn and I don’t like being told what to do!  I question everything I think I know.  It’s led me to a place where I know myself and my illness.  I know what is best for me; but also, I’m not afraid from ideas to be challenged.  I’m happy to change direction if I think the advice could be beneficial to me.  The only thing I’ve been guilty of in the past is allowing people to cause me to question myself.  There are times when I have allowed myself to believe “it’s all in my head”, which is nonsense of course!  If this was all in my head I dream up something an awful lot better than this!

[Tweet “I don’t follow advice lightly, I question everything. @claros00”]

What is one thing you’ve learned about yourself since your diagnosis?
I used to think having this illness made me weak, now I know I am the opposite.  It’s easy for others to say “maybe you should get out of the house…”, ” If it was me, I would….” .

It has made me realize that I am incredibly strong; I force myself to get up every day.  I make that choice not to give up. Even on the bad days when I cry till it hurts and I just don’t think I can do it anymore there’s a tiny voice inside me this says “there is always tomorrow”.  That makes me pretty strong!

On the good days when a feeling that it’s all too much I remind myself that… “I’m doing the best I can, with what I have, at the moment.”  It’s kind of my motto to life!
[Tweet “I used to think having #Fibro made me weak, now I know it’s the opposite. @claros00”]