Written by Dina Newton-Edwards
aka Bossymamma http://bossymamma.blogspot.co.uk/
I DON’T LIKE MOBILE PHONES!
I was delighted to be invited to write a guest post about Fibromyalgia and I sincerely hope you will enjoy reading it.
Allow me to tell you a few facts about myself: I am 50-blah years old; I have a few ongoing health issues which cause me little or no trouble, apart from long term depression and anxiety and a chest condition; I have a partner who has Parkinson’s Disease, which is currently well controlled; my elderly mother has multiple health problems; I can sometimes act like a petulant child; I have Fibromyalgia.
I was very lucky because my GP recognised my Fibromyalgia for what it was almost immediately. In August 2014 I became ill with a chest infection, but this one manifested itself differently from all that I had suffered previously. Most notably, I had chest pain which radiated through to the thoracic region of my spine and I was excessively tired. I was so tired that I would fall asleep almost instantly. Certainly, if I were using my iPad or knitting, I was likely to fall asleep whilst doing so.
As you may imagine, I saw my GP several times during that time. I also saw another doctor within the practice but I believe they were both sufficiently on-the-ball for that not to have been detrimental to my treatment. To begin with, it was thought that the chest/back pain were due to the chest infection but, as it became clear that the infection had cleared, a rethink was necessary. This was when my GP first mooted the idea that I may have Fibromyalgia. At the same time as talking about FM, he also mentioned Post-Infection Malaise. I told him that I didn’t want FM so I was going to assume it was P-IM (that’s where the petulant child, mentioned above, comes in!).
Unfortunately, my petulance didn’t work and, about four months ago, I had to admit that I have Fibromyalgia. I knew very little about it at that stage. When my GP, Dr. Azeer, had first mentioned it I looked it up online but very soon decided that I didn’t like what I was seeing, so I stopped looking. Besides, I was still trying to convince myself that I had Post-Infection Malaise. When Dr. Azeer confirmed the FM diagnosis he gave me a brief outline of the condition which he had downloaded from www.patient.co.uk . I read the information and still didn’t like what I saw. I know that sentence sounds a bit odd but I have a tendency to worry about things that haven’t yet happened or may not happen. The reason that is significant is that, as of yet, I have not suffered excruciating pain. The mere thought of that type of pain absolutely terrifies me, as do many of the other symptoms I might suffer. I find that I am able to cope more easily with some things, if I lock them away in a safety deposit box in a dusty old safe, behind a locked door, in the darkest recesses of my mind – in other words, if I bury my head in the sand and totally ignore them. So, that’s what I have done with that
However, it’s not so easy to do that when it comes to tiredness, exhaustion, fatigue or whatever you choose to call it. Those are the symptoms that affect me, often severely, on a day-by-day basis. They are the things that worried me as soon as Dr. Azeer confirmed the FM. They really worried me and, in fact, still do. I worry that if I go out, I will become so exhausted that I will not be able to get home. I dare not walk very far because I am afraid that fatigue will strike. When it hits it can stop me taking even two or three steps without first working out how I will be able to force my body to move. I am losing the confidence to leave the house – and I’m not sure what to do about it.
I have worried so much about this that one of the first things I did post-diagnosis was go and sign up to a monthly mobile phone contract. Doesn’t sound much, does it? But it is! I hate mobile phones. I don’t want to be contactable 24 hours a day, seven days a week. I don’t want people leaving me messages and expecting me to ring them back. I am perfectly happy that people have to wait until I am home to be able to contact me, or for me to contact them. Well, that’s how it used to be. No, let’s be honest, that’s how it still is… except for the last part of the final sentence. I signed up to a mobile phone contract because I am terrified of being stranded somewhere alone, when fatigue strikes, and not being able to get help. I didn’t want a pay-as-you-go phone because I always forgot to top up the one I already had. I needed to know that I could ring for help any time I needed to, from anywhere – really needed to know it. And a contract phone gives me that reassurance, even though I hate mobile phones…