The First Time ( A Journal)

I remember when I first got ill with cfs/me. I caught  flu which left me so weak that I was bedridden for 9 months.  It was a hard battle as my mother was dying , my marriage was breaking up , and I felt I had no-one to turn to , yet somehow I survived, it was a long long battle but I got there .

 Slowly I managed to get back to a normal life, working and even managing to go to college and completing a diploma in counselling. That was 11years ago. My life moved on , I felt complete as a single woman , and independent , I loved my life and I embraced my solitude.

Then I met someone who turned my life upside down, helped me regain my trust in people and showed me without even realizing it that I could love deeply. Can you believe I proposed to him within 3 weeks, and within a year we were married. For the first time, my life was complete and I thought I couldn’t ever be happier.

Then last year I got ill again, a virus that just floored me, and left me with major cfs/me and such intolerable pain that was taking over my body. I was eventually diagnosed with Fibromyalgia, and in that moment I knew my life would never be the same again.

Before this diagnosis, I convinced myself daily that I would get well again, I would return to work; I would be the person I was before this illness hit me. However, slowly it took every bit of me , I had to give up work, I couldn’t drive anymore, I couldn’t dress myself, or feed myself without becoming very weak and needing help,  and I couldn’t even brush my hair, or do the normal tasks like personal care without needing help .

I felt lost with no place to turn, for I could do nothing to stop this happening, and all the time the intense pain spread through my body leaving me weak and unable to walk or do the things I did before I got ill . My home became my prison, I couldn’t walk upstairs without such fatigue, and I had to come downstairs on my bottom. I had to get a bath lift to allow me to shower with assistance, i also needed a high toilet seat and a commode. I thought what a life, this is just an existence, and I wanted to die.

It seems i have lost control in many areas of my life too for example,  I cannot be trusted to take my own medication, I suffer from 'brain fog' I forget things so easily and have taken my medication twice with bad side effects so Colin is now having to deal with all my medication. I also suffer from 'slurred words' and getting my words mixed up when talking, saying words that just don't make sense regarding the the topic or sentence. This is very upsetting for me , but as time goes by we just try to make light of it .   I have lost my ability to concentrate , bright lights hurt my eyes, and i can't tolerate loud noise. I find it difficult to be around people , i take panic attacks and crowds make me feel trapped and frightened. I used to be such a people person , I loved people, i loved company, now i live a solitude life with Colin my only company, I miss girl talk and have talked with Colin about maybe getting a befriender, but its only talk , i haven't done anything about it yet, truth being i am lost in my own world .

The first time I accepted that I would have to use a wheelchair, I realised that again my life would never be the same. I became so depressed and saw myself as a failure. My new husband was now in the role of ‘carer’ I felt guilty and wallowed in my own sadness. I felt I had lost everything. I became so aware that people now treated me differently, they didn’t speak to me , they spoke to the person who was with me , for I was now a non person in a wheelchair

 I couldn’t go out unless my husband took me , I couldn’t wear heels anymore, I was such a girlie girl before, loving make-up, loving heels, and now ..... My husband unconsciously would wheel me away from heeled shoes when we were in shops (or did he, I wondered if he was just trying to protect my feelings) I couldn’t even shop anymore for i couldn’t reach up to see clothes I liked hanging on pegs, I was frustrated, and now although I loved the shops, I became sad and envious of people who could walk and do all the things I couldn’t do ,  simple things so many take for granted , and now I became obsessed with what I couldn’t do rather than what I could do.

I spent months suffering chronic pain, my muscles constantly went into spasm, and i experienced  such burning sensations and restless leg syndrome, these symptoms i suffered just went on and on and on , I felt I had no-one to turn to, my doctor didn't seem to be of any help and the pain killers i was taking would have knocked out a horse , unfortunately they did nothing for me . On the recommendation of some-one I went to see a different doctor who immediately arranged for me to be seen at the pain clinic, it seemed that I waited such a long time to finally be seen but eventually I felt some-one cared and understood my pain and how it was so soul-destroying, finally someone listened to me , and i felt as if i counted .

 I now get acupuncture on a regular basis, I can’t believe the relief it gives me from my pain, the energy it gives me, and the fact that I can now sleep peacefully all night. Unfortunately acupuncture has its down side, I find it extremely painful. So many tears..

The effects take at least 3 days to kick in and only last a few days...... But I hang on to the good feelings.

I try to remember the things I can do, and be ever thankful for the love and support I get from Colin my husband, Sue my dearest friend, and the doctor and nurses, and community care team who take care of me.

I still have to use a wheelchair when outside for my ability to walk any distance is hindered by intense pain. But now I accept that i need to use a wheelchair.

 I still have my down days, I still feel very sad at times, I still have days when all i can do is sleep and i feel so ill. Days i can't get out of bed, days i can't get dressed, days when i am up for less than 3 hours then i need to go back to bed to sleep for the rest of the day, and I still wonder what my life will be in years to come, but I know that as long as I am loved I can get through this.

I have written this journal and tried to be honest in my feelings, so that anyone who reads this can connect honestly to their feelings too, and know that they are not alone, know that others share their feelings and understand.

 If anything, my illness has taught me that there is a positive reason behind everything and try to seek out the positive whenever I can . I  feel that through my suffering and experiences I can honestly empathise with others, and let them know that I truly understand, 

 I want them to know that they are not alone, and that  I care. 

I have been told that I am brave, I'm not brave, i'm just me and i wonder constantly where i find this inner strength to help me go on .

Kira x