A new section has been added to this blog as Fiona has moved her old blog in to this one. You can visit this section here.
My friends and family often ask me how I contract and what is Fibromyalgia, Myalgic Encephalopathy and Chronic Fatigue Syndrome. It’s like asking what’s the meaning of life! Is so complicated that I decided to write how it effected me instead.
I played life’s health lottery and lost! I was diagnosed with Fibromyalgia, Myalgic Encephalopathy and Chronic Fatigue Syndrome (FMS, CFS/ME) after a long period of going back and forth to the doctors. You didn’t know how sick I was, you called me a hypochondriac behind my back. I hope by reading this it will give you an understanding into my world.
My life has changed dramatically, I don’t really understand it myself, so I will try my best to explain to you how my body has changed and how some things that have never affected me before do now.
Below is just a very short view into part of my world.
FMS is not the latest craze in diseases. In fact, it isn’t a disease at all. It’s known as chronic rheumatism, myalgia and fibrosis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Other syndromes in this little group include rheumatoid arthritis and lupus.
The many physical and emotional problems associated with FMS are NOT psychological in origin. Trust me, this is not an “all in your head” disorder.
Fibromyalgia is a common condition characterized by severe long-term pain and tender points in joints, muscles, tendons, and other soft tissues. Fibromyalgia has also been linked to fatigue, morning stiffness, sleep problems, headaches, numbness in hands and feet, depression the list goes on and on.
I think I can pin point when this could have started. Thinking back it must have been my 2 months stint in St Georges Hospital in 2013 when I had a perforated bowl. The consultants say that this kind of trauma can lead to Fibromyalgia.
My pain is not caused by inflammation. I work a fulltime job with my pain, I don’t know what each day will bring as I don’t know where my pain will be i.e. Today it is in my shoulder, but tomorrow it may be in my legs or even in my arms/hands. Sometimes I feel as if it`s my whole body. My pain is believed to be caused by improper signals sent to the brain. It is not well understood, but it is real.
My fatigue – I am sometimes not merely tired, I am in a state of exhaustion. I may want to go out and do normal things, like going to the cinema, or the pub or just going for a walk, but I can’t. Please do not take this personally, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember what I promised to do for you, even though you told me just seconds ago. We make a plan of action to get me through the day, remembering to think 10 steps ahead, but guess what, the fibrofog sometimes won’t let me do that.
My sensitivities – A number of things affect me but mostly odours and loud or high-pitched noises. FMS has been called the “aggravating everything disorder”. Loud bangs or unexpected noises make me jump, babies crying make me get up and leave a restaurant. Strong food smells make me want to be sick and then leave me with a headache. I really don’t stand it as these things have never bothered me before and it really frustrates me at times.
My intolerance – My internal thermostat is broken and can’t be fixed. I can’t stand heat or humidity. My hair is constantly wet because I sweat all the time, this is so embarrassing so please don’t point this out to me, trust me, I already know. Please don’t worry if I shake uncontrollably when it’s cold. I can’t tolerate the cold either, in fact it makes my pain worse when it’s cold. As I said, my internal thermostat is broken, it’s not my fault.
My depression – Yes, there are days when I would rather stay in bed or in the flat, pain can cause depression. Your concern and understanding is touching and is appreciated, yet snide remarks are not called for or welcomed. I will improve, I don’t know when, it might be something little that will bring me out of it. It’s not your fault and it’s not mine.
My sleepless nights – I don’t know how to switch my brain off, I have 100 and 1 things going around and around in my head, I worry about the slightest thing and lay in bed at night thinking about them.
Sleepy days – Some days I feel so tired, my body feels like lead, my whole body aches, I have no energy, even though I have been in bed all night, when I wake up I just want to go back to bed again, please understand it is not my choice, the choice has been taken away from me.
My stress – My body cannot handle stress. Stress makes my symptoms worse and can incapacitate me completely. I try to avoid stress but stress will not always leave me alone.
My weight – I may be overweight, but believe me, it is not by choice. My appetite is broken, and I’m struggling to cope with it, if only there was a magic pill. I don’t like my body like this and I can’t help the fact that I crave food all the time, I try my best but my best is not always good enough.
My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks. In fact, the good days are what keep me going. I try to do what I can as I never know when the next flare will return.
My medication – I have had to try several cocktails of many different medications to help me get through the day, so please bear with me if I seem out of sorts, the meds cause all types of symptoms, i.e. sickness, headaches, drowsy, heart palpitations. Some meds can take up to 4 weeks to kick in but it only takes a few days for the side effects to kick in.
Cravings – Please don’t think I am being greedy, it’s not my fault it’s the side effects of my meds. I try to resist but sometimes it gives me pleasure to eat that biscuit in the cupboard, I try to have more control over the cravings and to eat healthy snacks but you always see me with my hand in the cookie jar.
Clumsy – I know there are days when you think I am cumbersome, I don’t want to be like this but my legs feel like they have been set in concrete and my hands painfully cramp up. Not my choice.
Dinner- The pain in my hands and legs don’t always allow me to prepare your dinner, this might seem a small thing to you but it’s a big thing to me. I love looking after you and preparing dinner for you, but it’s the pain stopping me. If I stand up for too long my legs scream out in pain and I have to go and sit down, I feel so useless.
I hope this gives you a little understanding into my world and how I have to cope on a daily basis with constant pain.
So, here I am, 2 years later, alive and kicking . . . . Well almost!
My journey has taken me through some of the toughest times of my life but I came through it, what I thought was unscathed . . . . How wrong was I!
I now have CFS/ME, sever Fibromyalgia and rotary cuff syndrome . . . . Joy!
It’s been tough getting the correct cocktail of drugs and treatment but I think we’re almost there.
I’m writing this blog to help myself and to help anyone else out there.
I’m one of the lucky ones, how so I can hear you say, well, I’m lucky enough to have private medical insurance and was diagnosed and treated quickly, but for a lot of people out there, they struggle to get a diagnosis, but don’t give up. Keep going back to your doctors, get a history built up and don’t give in.
I hope you will enjoy my blog and I hope it will help some people as previous blogs have helped me.
So here we are two months later. I’ve endured two major operations (of which both wounds went septic!), l nearly died, had peritonitis, a collapsed lung and a stoma that was positioned right onto my skin, so every time it emptied itself, it felt like someone was squeezing lemon juice into an open wound. I’ve suffered some terrible neglect from certain nurses and seen unnecessary mental abuse to elderly patients. On top of all this, l watched an elderly lady in the next bed to me refuse food for two weeks and saw the nurses ignore it saying she was just being stubborn! Similar scrutiny by these oh so caring nurses has meant l’ve left hospital two stone lighter! Now let me ask you a question, do you think it’s acceptable to put two suicidal patients who had stabbed themselves and were being guarded by psychiatric nurse’s for 24 hours, on a ward with surgical patients? Also, do you think it’s okay to allow an elderly senile patient to wonder the wards in the middle of the night, banging on windows and pulling back curtains that had been pulled around beds, shouting out for her husband, whilst the frightened night nurse is stood in the corridor saying ” you really needed to go back to your room now”!!!! l would like to offer anyone who has been treated badly in hospital, the following advice; Complain to the ward matron! They all have one and they will deal with any complaints. I complained once and the nurse in question was reprimanded!I was amazed! Remember! You are their customer and customer service still applies. If you booked into a hotel and was treated badly, would you complain? I’m sure you would, but this isn’t a hotel, it’s a hospital and it’s your health and life at stake. If these people don’t want to look after patients, then they should go and work at a supermarket, staking shelves. Nursing should be a vocation, not just a wage at the end of the month! I have been to hell and back at that hospital and sincerely wish anyone about to be treated there, my heartiest good luck. There is much more I can write and will write when I feel better.
So I had a major operation on Friday night and I am now in the High Dependency Unit at St Georges Hospital in Tooting. I have been in pain ever since. At 1 am on Saturday morning Court talked to ICU and could not get a reasonable word out of them. He even had to explain to one doctor what a Post It Note is!. The most common phrases I hear in English from the staff usually very loudly are “I don’t know”, “its not my problem” or “it wasn’t me” and then that’s when they speak in English. When Court is here because he is restricted by visiting times he has to attempt to bully the staff into making me more comfortable, get me help and pain relief and help calm me down from my pain and stress levels. They even managed to cock up all my intravenous lines and leave me with a huge “bubble” in one arm. I can now only have pain relief orally. When I ask for painkillers the answer seems to be “morphine” now whats the question! (This post was ghost written by Court when I told him what to say when the staff were not looking. I do not have the energy to post myself right now.)
I have not been allowed fluids since 11am this morning and the temperature has hit 32 degrees today and they forgot to give me any intravenous fluids. I finally went searching for an answer to why l hadn’t been taken down for my surgery at 5pm. Nobody at the nurses station could give me an answer until l saw one of my surgical team at the end of the corridor, l walked down to find out what was going on and was told that my surgery had been cancelled. The senior sister didn’t know l had been without fluids for 7 hours in this heat! I think St Georges are trying to get back in the papers for killing another patient due to dehydration! Keep going St Georges Hospital, you might make it a hat trick! PS: I had to call Court a number of times today to help me and he is so pissed off at the moment. Still he managed to make it halfway across London in a taxi in heavy traffic in under 25 mins! Expect his blog to be updated shortly. I’m still trying to find Derek the cabbies’ blog so I link to it and thank him for driving for so fast and finding short cuts we never knew existed 🙂
Today is focused on a lady called Unis, a nurse of outstanding care and attention of her patients and the up most respect for her colleagues . . . NOT! She marches onto the ward with all the pomp and regalia of a peacock and barks orders and insults at the patients. She has delusion of grandeur and belittles her colleagues openly. This woman has no empathy whatsoever and as far as l’m concerned should never been issued a nursing license. She will tell us that we are disturbing her if we ask for anything and insists the student nurses do the jobs she feels are below her, even if they say they don’t know what they are doing. There is a patient here with three stomas and the bags need to be changed before eating or drinking anything in the morning. UNIS refuses to acknowledge the urgency of changing the stoma bags (as they are full of excrement and feels she is to good for that job!) and leaves it to the last job of the morning after getting people out of their beds and changing them, this leaves her very dry to the extent of fainting as she has lost a lot of fluid from her body over night due to the stoma.
I have been at Georges Hospital in Tooting, London for 39 days now. Here is an update. Courts blog tells you the rest and this one is so similar its unbelievevable Had to wait 2 hours for orimorph as the senior nurse was on her break and there wasn’t anyone to cover her bay whilst she was away. I had to wait over an hour the other night to get my stomach bag changed as the nurses were all busy with other things . . . . . . this was 3am in the morning and poo was running down my side onto the bed, when l buzzed one of the nurses to get more cleaning cloths to soak up the poo, she was very aggressive saying how busy she was, even before she gave me a chance to open my mouth and simply ask for more cloths. The following night the same thing happened but l only had to wait for half an hour this time! I was left in pain for 5 hours waiting for a nurse to get my morphine injection. One nurse has now spent a total of 6 hours doing the croissant ladies hair whilst the 95 year old lady is ignored in the next bed as she is too scared to ask for help (she will quietly cry to herself and is ignored but l’m on the far side of the ward but l can hear her!). When a new patient is discharged, she is asked to complete a questionnaire, whilst the nurse stands over her.