Life with Me/Chronic Fatigue. By Anne Brewitt

[annebrewitt]

I have had ME/Chronic Fatigue now since the birth of my first Son in 1984, although it was not diagnosed until 2004. In the early stages, I just felt continually tired. I would get my baby washed, dressed and fed, then go back to sleep until 4 pm sometimes. I struggled every day to do simple things. Taking the children to the park was hard, as I would feel so shaky and have to get home quickly, as I did not have the strength to be out for very long.

Then years later my family and I moved down to Suffolk in 1990. Things seemed to get even worse. I did not have the strength to get my children to school in the morning and had to wait until my mum moved down to help me. Later we got two cars, so I was able to drive the children to school, although even then, I would come home and sleep until it was time to pick them up from school.

My mum sadly died in 1997, so things really were tough. Then my husband was diagnosed with lymphoma cancer and I felt so bad, as I had no strength to do anything and I should have been looking after him, but he was having to keep up with putting the washing on at times, as I did not have the strength to lift anything. By the time I'd, had my bath and got down stairs, I had no strength to even make a cup of tea and would have to rest most of the day. Then sometimes I would get energy late at night and start to do things that I could not do during the day.

When I went to my doctor, which I did on numerous occasions, to say how tired I was, she just said I would be, having four children and a sick husband! My memory got so bad, one day I cooked my husband a meal and forgot I had done it and cooked another one. I then found I already had done him one and put it under the grill! Once again, the doctor put it down to having to look after 4 young children and my husband not being well. In between this, I did get times when I started to be able to do more, although I think it was sheer determination that got me through, plus the strength of a loving GOD who gave me the strength that I needed for each day.

Then in 2003, my 14 year old daughter got a really bad virus. This made her so ill, she did not have any strength to do anything. Time went on and the doctors kept saying she was fine and that she was only recovering from a virus and she would soon be alright. Things got progressively worse and in the end after having 4 doctors say there was nothing wrong with her, I went over my doctors head and found the telephone number of the doctor that was head of the ME/Chronic Fatigue clinic. I called and left a message on his telephone answering machine. He called me back the next day and said he had been recovering from back surgery, but from what I had explained, he had no doubt in his mind that my daughter had ME/Chronic Fatigue. He set the ball rolling and called the hospital to arrange for my daughter to be seen. Eventually, Dr Terry Michelle, the head of the ME/Chronic clinic, came out to see my daughter and within a short time diagnosed she had the condition.

From then on, we had an occupational therapist come out to see my daughter, as she was too ill to get out of the house for 3 years. It was during these visits to my daughter, that I started to talk about my struggles and the occupational therapist said it sounded an awful lot like I had what my daughter had and that I had been what was called ‘busting and booming’ This is when you suddenly have energy, after resting for some time and then you go mad, doing all the things you could not do before, but then it hits you like a tone of bricks and you are then zapped and laid out for the next week or two. I went back to my doctor and was fortunate enough to see another doctor, who referred me to the ME/ Chronic Fatigue Clinic. Before I received an appointment, I was sent a very thick large questionnaire that I had to fill in, asking me about my symptoms, which I had to send back to the hospital. I received my appointment after about six months, as it takes that long to eliminate other conditions which I had to have tests for.

During this time, things reached crisis point. I got a terrible chest infection and was so ill. I was sleeping 24 x 7. I only woke to have a bath, eat and go to the loo, the rest of the time I slept continually for three weeks. I started to get terrible pain in my ribs, as if I had been kicked from the inside. My knees felt like someone had taken the skin off and put freezing cold ice on them, then put the skin back. Friends of mine were so worried they came round and took me to the hospital, as they thought I was dying. I felt I was dying, it was the worst journey of my life. I felt so weak and numb all over. They held my arms as they walked me to their car. How I did that walk, I will never know. When they got me to the hospital, I had to wait a while. I just wanted to lay down but couldn't. I felt numb from top to bottom, I just wanted to lay down and sleep. When the doctor called me in, he checked me over but could not find anything wrong, other than recovering from a chest infection. I thought, dragging me out and putting me through all that for nothing!

The day came for my appointment at the ME/Clinic and as I walked through the door the lady doctor said to me before I had even sat down. “Good morning Mrs Brewitt, I have read through your file and I am sorry to have to tell you that you have ME/Chronic Fatigue and there is no cure, it is something you just have to learn to live with!" I could not believe it, she said it out so quickly, before I had even been able to sit down. I was really hoping it wasn't, as people asked me if I was relieved that it had actually been diagnosed at last. But I was really hoping that it wasn't that. The cause was traced back to a really bad virus I caught while pregnant with my first son.

Since then I have had to learn to cope as best I can. My lovely husband sadly died April 2009, so it has been one big battle after another. I hate the days when I just can’t do anything. Short term memory is affected and I get lost quite a bit even when driving to town. Right now I am fighting falling asleep. The joint pain only came about after I caught a severe chest infection in 2004. Also, having my daughter and now myself with the same condition was a double whammy, although in a way I am glad that I now know what she has to go through. On a positive note, we are better than we were, but we have to listen to our bodies, as if we don’t, it can set us back months. Also, if it was not for JESUS CHRIST my LORD and SAVIOUR, we would never have got through this and reached where we are today. This is not the end, there is life after ME/Chronic Fatigue. If anyone who may be battling the same, or similar condition, would like to speak to me at any time, I would be more than happy to help and encourage them in any way I can.

[cromanovska]

sorry to hear it took you so long to get diagnosed.... I can't believe that doctor just ignored your condition!!!! I was diagnosed in 1994 and i do suffer from a lot of the same symptoms as you but fortunately I have no husband any more and my kids are grown up. I never fight tiredness I just go to bed, and try and pace myself, although I have no stamina at all and quite severe mobility problems.. I am just recovering from the Norovirus and boy is that hard... Bless you i hope things improve as the years go by ****HUGS****

[Wilf1e]

I can empathise with all that you've said. It is so similar to my own experience. I only have one daughter. She has always been very bright and determined and fights hard to be successful in all her endeavors. She is 19 and despite all we've been through, is in Uni. She gets very tired and has frequent colds and I have been very concerned that she will overdo things and end up like me but, at the same time, I want her to be objective as well as cautious. We all have a much better relationship with our GP's now but it took years of suffering and external pressure from family, my employer and colleagues for me to get the acknowledgement I needed. A little support and understanding can go such a long way. The hardest part is the boom and bust because you just want to get on with life while you feel up to it and there's always this nagging hope that this time, if I push a little harder, I may get further forward to full recovery in the long run. Sometimes this works for a while but it only takes some unexpected worry or anxiety or extraordinary physical demand to bring me back to reality. I then have to fight through the black mood this inevitably brings before being able to dust myself off psychologically and get back to the basic priinciple and discipline of pacing again.

I can say that it does force you to slow down and take in the beauty of life. Sometimes all I am good for, when I am awake that is, is watching the birds in the garden. I get far more peace and pleasure from this and spend very little time indulging the TV which, I find, exhausts me quickly.

I wish you and your family a stably, improving future that you can make the very most of and continued positive encouragement from every possible source.

[annebrewitt]

Thank you Croma and Wilfe, for your encouraging messages. I think it is always easier when others know what the battles our with this condition, than those who don't. It has made me stronger in a way, in that I do not let the comments of other people, who have no idea what we battle, upset me any more. I have learnt to do what I can do when I can and if I can't then I have to rest. For someone who is healthy with lots of energy, it can be difficult for them to understand. I have a friend who is ten years older than me and she often has said she is ten years old and she does this, that and the other and in her mind she cannot understand the battle just getting up, bathed and down stairs is. The thought is, how can someone who has been in bed all night, then feel tired after having a bath or shower and then have to rest again. She would say my daughter is only a young woman and should be out, not in bed half the day. I just hope these people never have to got through it, as there is a true saying 'You reap what you sow'. God bless you both and I pray you have blessed new year and that you willl get stronger and be able to enjoy a good quality of life.xx

[sonia72 in reply to annebrewitt]

Hi, its a horrible thing to have, my situation with M.E quite similar, i have got alot worse over past 4/5 years and alot of time i will sleep all day, quite easy. I feel guilty and lazy but i have no energy to do the smallest things, and the guilt just gets too much, my children just think im lazy and dont understand as much as ive tried to explain, i wish i had friends closer to me who i could confide in, as no one really seems to understand my life, well i dont so how are they meant to! I wish you and your daughter well, thinking of you both, its not nice xx

[annebrewitt in reply to sonia72]

Thank you for your message Sonia and I am so sorry you have had such a hard time too. I have had people call me lazy and it used to really hurt at first, Now I try to do the best I can when I can and I don't take any notice of unkind remarks anymore. I have said to people everyone is different. What effects one person may not effect another in the same way. The tiredness and weakness is awful for anyone, let alone for people like us that have to deal with it on a daily basis. Don't feel guilty, I used to but don't anymore. My family now know if I cannot do something, they have to help more. My daughter does get upset, as she so wants to be able to live a normal life and I believe she will in time. It is just season we are going through. I pray that you will get better. God bless love Anne.xx

[tettridge]

Hi

I had ME in the late 70's and although have had tiredness bouts I thought I had beaten it .

I have had a crop of bad health over the last few years and something my doctor said really shook me up - You never get rid of ME it is something you have and you deal with as you can.

I was really upset to find out that it still plays a part in any diagnosis I have, from the tiredness from the tablets or the heavy working week I put in (when I was able to work) to yes you will be tired from the pneumonia but also from the ME and the meds (nearly wrote drugs, we do not take drugs we take medication) you are on.

Still I have been taking little steps to getting better and with determination I know from experience that I can if not beat it then just sideline it and try my best to live my life as well as I can.

Take care and kindest regards

Terry

[annebrewitt]

HiI Terry,

I think it helps to be positive, although I have to confess, I get very down on days I feel so weak and tired. I am still awake at the moment and it is 4.17.am and my brain won't switch off. Yesterday I had to have my family take care of all the washing, putting it in and out of the washing machine and getting it dry, as I felt too rough to do anything. Once in a blue moon I will be able to sail through and do everything that needs to be done, but most of the time it is a struggle. I think pacing ourselves is the best way,,as if we force ourselves to do more than we are really capable of doing, it makes us worse in the long run. I used to feel terribly guilty, as I went from being a very active capable person, to not being able to think straight at times and do all the normal things mothers and housewives do. Getting lost was a nightmare and very scary, I thought I was going mad until my occupational therapist said it was all part of the condtion. Each individual is different and we do not all get the exact same symptoms as other sufferers. I hope you do get better soon, I am believing for total recovery, as I think sometimes doctors can be too negative.

God bless and take care.xx

[Andy4]

Dear Anne,

I live in India and have been living with the symptoms of ME CFS for the past 13 years. Unfortunately this disease is still not recognized in India and hence I have never received a formal diagnosis. Medical fraternity here is far behind the western counterparts in recognizing ME CFS. So you have no idea how grateful I am for your blog and for your words..... for sharing your story with others like me! Your story struck a chord... though, I never had to take care of anyone else.... except myself... and yet even the simplest tasks felt like a mountain to climb. I only had to endure my parents berating me day and night for being lazy.. .. for the past 8 years. They simply refused to believe there is such a disease as ME or CFS. Even going to the extent of forcing me to visit a psychiatrist for treatment of my "mental illness". Fortunately, the psychiatrist found nothing wrong with me mentally and asked me to look at other forms of treatment. Finally a doctor friend hinted at a "new" disease called CFS and I started reading about it online in 2006. I just want to ask you if your GP or any one else have mentioned Adrenalin Fatigue or been treated for the same?

Thank you and May God Bless you and give you the strength to carry on with life.

warm regards

Andy.

[annebrewitt in reply to Andy4]

Hi Andy,

Thank you for your reply and I am so pleased my story blessed you and reassured you it is not all in your head. My GP has never offered any treatment for Adrenalin Fatigue. In fact unfortunately there is no real treatment for ME/CFS. Pain killers are given for muscle and joint pain, but not all sufferers find much help, as a lot of the time it is due to nerve pain, caused by the condition. A good programe of healthy eating can benefit the ME/CFS sufferer, as certain foods can make you feel worse.

I do pray you get all the help needed and if anyone says to you, that ME/CFS does not exist, just show them the comments and information on this page. Here in Suffolk England, every day more and more people are becoming ill with this condition. It has been suggested that one of the main causes could be the pesticides that they put on the fields.

Take care

God bless Anne

[myhealthneeds]

Things are very difficult in Wales too as there is no clinic for ME and many doctors don't recognise it or say that it is a mental health problem.

Anyone from Wales?

Miriam