My latest writing attempt (about having ME) IMAGINE IT...

Discussion in 'Fibromyalgia Main Forum' started by Michelle_NZ, Aug 12, 2008.

  1. Michelle_NZ

    Michelle_NZ New Member

    Hi all, haven't been on in awhile as I have been having a real rough patch. Anyway, just got the urge to write about my experience with this horrible illness, and this is what came out in the last hour... I thought some of you would relate to it.

    Sorry its a bit long - I have only read through it once so it may need some editing!

    Take care


    Imagine you have a great life… Great job, earning good money with an awesome company. You are good at what you do… you are respected in your industry. You have a great career path mapped out – you are on your way to reaching your potential in your chosen career. It feels good.

    You are the fittest you’ve ever been. You go to the gym, you work out, and nearly every day you get outside and go walking or running. You LOVE it!! You are fit, healthy and happy. You are finally happy with yourself and your body.

    You have a fantastic group of friends, you have all been through a lot together and you think they will always be there for you.

    You are happy and in love. You have no worries about the future. You don’t worry about money, your health, family, children. As far as you are concerned everything is ticking along nicely.

    Life is good… actually it’s bl**dy fantastic!!

    Imagine it.

    Now imagine this.

    Almost everything you thought you knew or had is taken away from you. Your health, your job, your financial security, your independence, your ability to do “normal” things, even your friends.

    How could this happen?

    This is how.

    You become sick with a long term chronic illness known as ME myalgic encephalopathy or CFS chronic fatigue syndrome.

    It happens suddenly. You’ve had it before, but you thought you had recovered from it. You were so relieved and thought yourself lucky at the time, You are now terrified that it is coming back because the last time you had it you felt like you were dying, and some days you wanted to. It lasted 6 months that time and you are not sure you can go through it again. Little did you know that was only the beginning.

    Imagine that you are so overcome with extreme fatigue and exhaustion that sometimes you do not have the energy to shower. You can not leave the house. Your resting heart rate goes from 70 to 120 and sometimes beats so fast it feels like there is a butterfly trapped in your chest.

    Your blood pressure drops to 80 over 50. When you try to stand up you feel dizzy, nauseous and like you are going to pass out. You have to move slowly. You feel like you have been poisoned. You wonder how it is possible to feel so sick. The doctors are not of much use. You are scared. And you are getting sicker.

    Imagine it.

    Now imagine this… it gets worse. You are constantly nauseous, exhausted, out of breath, dizzy. Now you can’t think properly… “cognitive dysfunction” the doctors call it. People with ME call it “brain fog” – it feels like your head is stuffed with cotton wool. Sometimes you can’t remember what you were trying to say. You find it impossible to read as you can’t concentrate long enough to read even one page of a book.

    You go to the doctors and they tell you there is nothing they can do for you. There is no proven treatment or cure, and the illness is LONG TERM. Imagine that you could be like this for the rest of your life. Imagine that it could get worse and you could become bedridden… for years. You are scared to death.

    You are so sick now that you have to quit your job. You don’t know when or if you will be able to return. You are distraught at the loss of your career and financial freedom. You have to move back home. Your mother is now your nurse maid – changing the sheets on your bed because you do not have the strength. She cooks your dinner and hangs out your washing. You are 35, too sick to work and living at your mums. You are grateful you have somewhere to go and someone who cares about you, but it’s not how you pictured your life turning out. What’s worse – you have no idea when or if you will get better – or worse….

    Imagine it.

    Now imagine this – it gets worse. You start getting patches of numbness and tingling on the left side face and head. It’s kind of strange at first and you start to take notes and document these new symptoms so you can talk to a doctor about it. Your hands develop a tremor, so does your lower jaw. You get strange vibrations in your bones as well. The patches of numbness and tingling start to spread – down into the left side of your body, mainly your head and arm but now your legs are affected too. It’s also now on the right side as well, but the left it worse. As well as the tingling you have started noticing a terrible sensation of burning skin. It feels like someone has doused you with kerosene and set you on fire. These symptoms start off spasmodically at first but after 3 weeks they are constant… you feel them all the time to some degree or other. You are freaked out.

    Imagine it.

    Now imagine this – it gets worse. You are in constant pain. You have a headache 24 hours a day and 7 days a week. Parts of your body feel like they are on fire. You have developed sever facial pain and it makes you cry. The nerves in your teeth feel like they are exposed. Your mouth feels hot and peppery.
    It’s worse at night, and often so unbearable that you lie on your bed holding ice to your head and crying. You are crying because the pain is so bad, and crying because you are so distraught at what is happening to you.

    Imagine how distressing it is to be in so much pain and to be told that there is not really anything that can be done. Imagine trying to tell yourself that no matter what, you will not end it, but secretly you are terrified that you might have to. You can’t live like this. If you were a dog, a compassionate owner would put you to sleep. You start to wish you would die in your sleep, just to end the pain and suffering. You wish you could actually get some sleep, but since this horrible thing started you are lucky to get 3 hours a night. Some nights you don’t sleep at all and the days following these nights are awful.

    Imagine it.

    Now imagine this – while all this is happening over a 3 month period.. nearly all your friends “disappear”. They do not understand how sick you are or how much you need them. They don’t know how scared you are, or how much pain you are in. They don’t know that you want to die. The worst thing though, is that you think they don’t care. And the truth is, that some of them don’t.

    Imagine it.

    Imagine this – it gets worse. You start to develop severe sensitivity – to smell, light but especially noise. You can no longer go to busy noisy places. You need to wear earplugs to sleep and even to watch TV. Noise causes you physical pain. The doctors have told you that you have something called “central sensitization” – you look it up on the net.. it doesn’t look good. You can’t find any research that discusses how you recover from it, but you do find out about some drugs to help manage it. Finally you get *some* relief when YOU go to your doctor and suggest a drug that you have researched. This is the first of many medications that you will try over the next few years. This particular drug moves you from “suicidal pain” to “bearable pain” and you banish thoughts of ending it and feel grateful that it did not come to that.

    Imagine it.

    Imagine that this goes on for TWO MORE YEARS. Two more years of being in pain CONSTANTLY. You have a permanent headache, face ache, teeth ache, body pains, sore legs, IBS, exhaustion. Constant doctors and specialist visits, psychotherapists to help you “manage the changes in your life”, the pain clinic, neurologists, gastroenterologists, naturopaths. You spend thousands and thousands and so does your mother. You try different treatments, and by this stage you are now taking 120 pills per day. You have to count them out each morning and put them into a box that has different compartments. You have alarms set to go off at different times during the day to remind you to take your pills. You have to give yourself injections every night of human growth hormone (you don’t make enough because you don’t get enough good sleep), and B12 injections because you are always deficient.

    Imagine it.

    Imagine that this is your life. Your life revolves around this illness. It is the master and you are the slave. It tells you every single day what you can and can not do. You don’t know until the day what the rules will be. There are some things that are constant though – the tiredness, and the pain.

    You are too sick to work. You do not know if or when you will ever be well enough to return to full time employment but you do know that the odds are against you. Only 5 – 10% fully recover from ME and the longer you are sick the less chance there is of that happening. You have been sick now since Nov 2003… that’s nearly 5 years. You feel that you need to accept your situation, accept that this may be as good as it gets. You don’t want to accept it.

    Imagine it.

    You are still in constant pain – the drugs help, but they don’t take it away completely – and they have side effects too. Some make you gain weight, some affect your sex drive, they make it very difficult for you to orgasm now. You know that when or if the time comes that you need to come off them that it will be very very hard – like a drug addict coming off heroin. The doctors seem more concerned about this than anything else. You just want SOMEONE to take charge and help you get better. You don’t want to be sick anymore. You are sick and tired of being sick and tired. You hate taking all these drugs, but you have no choice.

    Imagine it.

    You spend most of your days by yourself. The living creature you see most is your cat. Most of your friends have disappeared. They are busy with their own lives, and coming to visit you, well they just don’t seem to have the time or the inclination. This used to upset you, but you have come to accept it now. It’s not their fault. You like to think that if it had been the other way round, that you would have been a good friend to them, but the truth is you’ll never know. You have a few friends who have stuck by you and you are grateful for them.

    You know that you will most likely not be able to have biological children. You are now 37 and taking ALOT of medication. If you got pregnant, you would have to terminate the pregnancy. You have thought about adoption, but you are not well enough to even take care of a baby or infant. Some days you can barely take care of yourself. You feel sad about missing out on this great part of life, but you try to not let it get you down.

    You can no longer do any of the things you used to love doing – going out for dinner – you have been out for dinner about 3 or 4 times in the last 2.5 years and its always a painful experience that causes you to feel sick for days after. You can’t exercise, in fact you have to be careful to not get out of breath as that makes you sick too. This includes housework and sex. You are always tired. You are always in pain. You have not felt “normal” for years and you despair that you ever will again. You try not to let this get you down.

    You try to focus on one day at a time, don’t think too much about the future and try to believe that you will improve enough so that at some point in the not too distant future you can live a life that is not defined by sickness and pain. You yearn to be able to contribute in a meaningful way again, to work, even part time, to have a family.

    You just want to be "normal" again.

    Imagine it.

  2. barbieb917

    barbieb917 New Member

    WOW !!!! Talk about hitting the nail on the head !!! You put the words so perfectly. I know we all have this disease, and live with it daily, struggling to live minute by minute. But when it is laid out in front of us to read, it really hits hard. How true each and every IMAGINE was. I will have to print this one and maybe pass it to some family members that still don't truly get it. Even after over 7 years, I still hear..C'mon Barb.. just get up and jump in the shower, that will get you going. Then we can go shopping, and out to lunch. Once you get moving, you will be fine. AARRGGHH..enough already. Am I right? Well Michelle, I am not new here, I have been a faithful daily reader for over a year now, just don't post as much as some of you, but do truly enjoy reading the posts daily. Thanx for the great Imagine story, it is perfect!
  3. Michelle_NZ

    Michelle_NZ New Member

    Thanks for that - I'm glad it resonates with you!! And I'm stoked to think that if you print it out and show it to people that it might help them to understand how it is for you.

    One of the hardest things I have found with having this illness is being MISUNDERSTOOD. People just dont get it!! I've tried and tried, and with some I've just had to give up.

    All the best and take care
  4. JoFMS

    JoFMS New Member


    thank you so much for this post - this is just how I and so many others feel, it explains it really well as if it's happening to the person reading it.

    Keep writing to inspire others x