Dear miserable human being,
Hi my name is Fibromyalgia I am an invisible chronic illness. I am now 'velcroed' to you life. Others around you can't hear me or see me but YOUR body can feel me. I can attack you anywhere or anyway I please. I can cause severe pain or if I am in a good mood I can make you ache all over.
Remember when you and energy ran round together and had fun? I took energy from you and gave you exhaustion. Just try to have fun now! I also took good sleep away from you and gave you brain fog aka Fibro fog. I can make you tremble internally or make you feel hot or cold when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed too. If you have something planned or are looking forward to a great day I can take that away too. You didn't choose me I chose you! I chose you for various reasons: that virus you never quite recovered from, or that car accident, or childbirth, or the death of a loved one, or maybe it was the years of abuse or trauma? Well anyway I am here to stay!
I hear you're going to see a doctor who can get rid of me? I'm ROFL (rolling on the floor laughing)! Just try, you will have to go to many, many doctors till you find one who can help you effectively. In fact you will see many who tell you' it's all in your head' or some other version of that. If you do find a doctor willing to treat this non disease then you will be put on many many pills.You will be told you are suffering from anxiety or depression, told to sleep or exercise properly. You'll be told to think positively, poked, prodded and most of all not taken seriously not taken seriously when you cry to the doctor about how debilitating your life is every single day!
Your family, friends and co workers will listen to you until they get tired of hearing how I make you feel. Some will say 'You're just having a bad day' or ' Remember, you can't expect to do the things you used to do 20 years ago' NOT hearing the fact that you said 20 DAYS ago. Some will start talking behind your back, while you slowly feel you're losing your dignity, trying to make the understand, especially when your in the middle with a 'normal' person and you can't remember what you we're going to say next!
In closing you've probably realised the ONLY real place you will get any support or understanding in dealing with me is other people with Fibromyalgia. They are the only ones who will understand your complaints of unrelenting pain, insomnia, fibro fog and the inability to perform everyday tasks 'normal' people take for granted.
Remember I am stuck to you like velcro and I expect to be together for the rest of your life!
Have a nice day ROFL
Firstly I would like to say if there is anything you read on here and you want me to clarify etc please leave me a comment/ question and I will try to answer you as best I can in a following blog. Tonight's answer is in response to asking what hyper mobility is. When I have tried to explain it before I have explained it as being double jointed. Being hyper mobile is being double jointed but having hyper mobility syndrome as I do entails more than just being extra bendy and supple.
- Joint pains, particularly after physical work or exercise - due to over stretching of the joint capsule (the structure that holds the joint) and ligament
- muscle aches and pains as your muscles have to work harder with supple joints
- back pain and neck pain
- tendency to bruise easily
- pain that gets worse through the day and better at night after you have rested
- night pains (in children)
Digestive system symptoms:
- stomach acid leaking from your stomach to your gullet
- stomach having difficulty emptying it's contents into the small bowel, which can cause bloating and nausea
- overgrowth of bacteria in your bowels - this may cause diarrhoea bloating and cramps
- Irritable bowel syndrome
- stress incontinence
- varicose veins
- flat feet
- droopy eyelids
- thin or stretchy skin
- blueish tinge to the white part of the eyes
Joint Hypermobility syndrome can cause abnormalities in part of your nervous system that controls the bodily functions. The autonomic nervous system.
These abnormalities can cause problems when you stand up or sit in the same position for a while. you blood pressure can drop to low levels. In some People this can lead to POTS. POTS causes your pulse rate to increase rapidly within 10 mins of standing up.
You may also experience:
- dizziness or fainting
- tummy upsets
- sensation of anxiety
- purple puffy fingers and feet
- heart palpitations.
I personally don't have all of these symptoms but with having Fibro it's hard to tell which is which as some stuff overlaps. I know both my children are super bendy I just hope it doesn't turn into the bad sort for them.
Thoughts for today....
I am currently wondering how long this flare will last if it is a flare that is. I am exhausted. My thyroid results have come back normal so it can't be that that is making me feel extra rubbish. My iron levels are down and I am due my B12 jab next week but still not low enough for me to be feeling this rubbish. I can't possibly blame over doing it as not done that much to over do it with. It's so frustrating. All I can blame is the Fibro.
I miss the sun and the warmer weather winter is a depressing time of year. It's cold and horrible and I hate the rain.
Tonight I have been watching the girls dance round the room whilst singing to One Direction and holiday party dances. They really make me laugh. I am always chief DJ. I wish I could get up and dance with them but a short burst of waving my arms and I was done in. Didn't stop me having fun and singing along though!
The children really keep me going so sitting and spending time with them always cheers me up on a down day. After their mad dancing we did some drawing and Lillie wrote a letter to her favourite funstar on holiday to let her know we were coming back in just under 2 weeks. Evie drew her a picture. By the way I still haven't written my packing list yet!
A note to finish.
A letter to 'Normals'
There are things I would like you to understand before you judge me...
Please know that being sick doesn't mean I am not human. I may spend most of the day flat on my back and I might not seem great company, but I'm still me stuck inside this body. I worry about school, work, family and friends and I'd still like to hear about yours.
Please understand the difference between ''happy'' and ''healthy''. When you've got the flu you probably feel miserable but it will pass. I've been sick for so long that I can't afford to be miserable all the time, in fact I work hard not to be miserable. So if I sound happy, it means I'm happy, it does not mean I am well. I may be in pain and sicker than ever.
Please don't say 'you're sounding better!'
I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for five minutes, doesn't mean I can stand for ten minutes or an hour. It's likely that five minutes has exhausted my resources and I need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases your either paralysed or can't move with Fibromyalgia it gets more confusing.
Please repeat the above paragraph substituting 'sitting up' 'walking' 'thinking' 'being sociable' and so on... it applies to everything. That's what fatigue based illness does to you.
Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) to one day walk to the park and back and the next day i'll struggle to reach the kitchen.
Please don't attack me when I am ill by saying 'but you did it before!'
If you want me to do something, ask me if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens don't take it personally.
Please understand that 'getting out and doing things' does not make me feel better, and can often make things worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were no longer to participate in life?) but it is not caused by depression. Telling me that I need to exercise is not appreciated or correct - if I could do it, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I have to do it right now - it can't be put off or forgotten just because I am doing something. Fibromyalgia does not forgive.
Please understand that I cannot spend all my energy trying to get well. With short term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realisation that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It does not mean I have given up. It's just how life is when your dealing with a chronic illness.
If you want to suggest a cure, please don't. It's not that I don't appreciate the thought, and it's not because I don't want to get well. It's because every one of my friends has already suggested every theory known to man. I tried them all, but quickly realised but quickly realised I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know it by now.
If you read this and still want to suggest a cure, suggest it in writing but don't expect me to rush out and try it. If it's something new with merit, I'll discuss this with my doctor.
Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and can take a long time to sort them all out.
I depend on you - people who are not sick for many things but most importantly, I need you to understand me.
Letter copied from the Fibromyalgia community.