November 2012 | My Journey with CFS

I totally understand M.E/Chronic Fatigue is a weird illness to get your head around. It is for me & I have it!

Nobody will ever understand exactly how frustrating and debilitating it can be when you 'seem to be OK' or what goes on 'behind closed doors'.

This week has been a bad week, I have been bed-bound all week, & when I say bed-bound, I mean bed-bound.

This means unable to get out of bed. I can manage to pull myself up from lying down, sit up on the bed, have a rest and catch my breath and slowly follow the wall and keep one hand on the wall as I make my way to the bathroom. When I wash my hands or clean my teeth I sit down, I can't stand for the time it takes to do those simple tasks.

Temperature
Too weak to eat/speak
Depression/anxiety
Light/noise sensitivity
Extreme fatigue
Bone crushing exhaustion
Chills/sweating
No cognitive function (brain fog)
Aching muscles & joints
Insomnia
Complete feeling of hopelessness
Sore throat
No appetite
Headache

I hate in a morning when I have to wait for my mum to come in and ask if I want a drink or some food. I can't call her, I can't speak. I can try, a small sound smaller than a whisper comes out. Try it now, whisper something... yeah it's quieter than even that. I haven't the energy to speak.

I feel so pathetic being back in the place of being so dependant on my parents again, I'm basically a small child. I can't even lift a small glass tumbler, I use a plastic cup with a straw.

This week I lay in bed all week, with the curtains closed in a dark room, alone with only my thoughts. The sunlight or any kind of light hurts my eyes so much, they are so sensitive when I am very poorly. I cannot stand any noise, if someone is mowing the lawn outside or I can hear the TV in another room, it causes me so much discomfort. The thought of even watching TV at this point makes me feel worse. I cannot describe the utter, utter feeling of wanting to just not exist.

It's so much physical and mental discomfort, your whole body is in pain and extreme fatigue, and you're in a constant battle with your mind.

These days I feel as though I am trapped in a body which is completely failing me. I feel like it's not me. I have a bubbly, chatty, bizarre, caring, funny kind of personality yet here I am unable to move!

What I really hate is when I'm being pushed in my wheelchair and I see someone I knew from my past or from school, someone who doesn't really know me anymore and they see a shell of a person. A sick person, in a wheelchair and I feel like screaming- "This isn't me! Don't judge me on what you see here!" This week, I wouldn't of looked out of place in a hospital.

Inside I'm waiting patiently for a recovery or a 'cure' and I can be finally set free. Until then I lie awake some nights, worrying, crying, thinking. "What on earth does my future hold with this body?" I am very scared of what that answer is. At that point you feel like the loneliest person in the world. I am positive most days, but really? What does my future hold? Will I ever have a family of my own? I really don't ask for the world.

I love that saying at the moment - YOLO (you only live once). Some say 'you only live once' so we must experience everything, see all the amazing sights this world has to offer! That would be great or just my health would be good for me.

Towards the end of the week I was able to finally have a shower & I made it downstairs. I just sat quietly on the sofa most of the day. Literally, lay on the sofa, no TV, no book, no kind of stimulation. Being downstairs was task enough. In the evening Hannah (my sister) came and sat with me, she flicked on the TV. Quietly, we watched Peppa Pig. Those who aren't familiar, Peppa Pig is a childrens show probably aimed at 2-5 years old. It was cool, it didn't require any concentration and it was just happy. I enjoyed it for the 45 minutes. I love 'In The Night Garden' aswell, people just think I'm weird, but I say whatever, at that time when your so poorly if it makes you smile who cares!

Downstairs on the sofa with Fudge

I am feeling abit better now. I am dressed and downstairs and speaking!
But I will have to take it easy and rest till my body decides it OK to start going about my normal M.E/CFS daily routine.
The thing is, I don't understand why I have been so severe this week. I haven't been particularly pushing my body. Something maybe just went wrong inside somewhere.

A quick thank you to all those who sent messages, it means alot to know people out there are thinking of me, I often can feel invisible.

Fudge dressed as a Reindeer

I'm really looking forward to Christmas time and all the cute things that come with that. Hope I'm feeling better.

Bekz xx

Tweet me: bekz24

I've had M.E/CFS/Lyme for 9 years now and have struggled alot with the anger and frustration which comes hand in hand with this illness. My psychologist helped me to see things a bit clearer, and reading various self-help books taught me new ways to look at my pain but I still struggled a great deal.

However, it is not until I recently became a Christian and found a relationship with God that I finally found peace with this horrible illness.

If you'd have met me two years ago, I would of told you "It's all nonsense how can a man heal people and walk on water". Growing up my parents had a faith, and as a child I attended a faith school but once I hit 13 and was struck down by being ill, any kind of belief I had vanished. If there is a God why was he being nasty to me and bringing this illness upon me!?

March 2011 I didn't have a lot going on in my life, my friends were all having the time of their lives at uni, my boyfriend at the time had a great job in another country, I'd left my course at uni, yes obviously I was ill living at home with my parents and didn't have a clue where my life was heading. My parents decided to try out a new church in Leyland and I thought I'd go, I was interested on what the preacher had to say, I had nothing better to do. I went with an open mind. I then went the following week...

Slowly, things started to work within me, I had a lot of doubts still and questions to be answered but I started to read the bible and knew there was something in this. After a mission week at church I came to know Jesus Christ as my saviour and Lord.

I now look on my illness with a fresh pair of eyes. Some would argue God sends illness upon people because of their sin, but we all sin, everyday so why is everyone not ill?! No, there is illness and pain in this world because we live in an imperfect world. Bad things happen. But whatever happens good or bad I know it is Gods will and Gods plan for that to occur. I believe God has a plan for me in my life, he is a loving God he wants the best for all his people, and without having M.E/CFS/Lyme I wouldn't be at this stage of my life. Certain people wouldn't be in my life, I wouldn't of learnt half the lessons this illness has taught me. Hey I doubt I would even be a Christian!

Going to the service each week is a highlight for me, when I am well enough to go, I learn so much. Friends I have made in the church encourage and teach me more and more about the bible and being a Christian but also about life. God has put these people in my life for a reason, and I am a forever grateful.

The main thing I have learnt is perseverance! We shouldn't look back like I did daily, "Why me? Why has this happened to me?" We must look to the future and the good that can come out of suffering.

I think I appreciate things more than some do. Hey a trip to the supermarket is a great achievement for me! Most take it for granted driving their car, parking, walking in and round for their goods and paying with not a second thought. I am truly grateful and thank God when I am able to do a task, or make any kind of improvement in my condition. I lay my life in his hands and pray for the courage and wisdom to continue the daily struggle with this severe fatigue.

"Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance" James 1:2

I still get angry and down and frustrated like all of us do, but I really try to take those problems to God and pray he will help me continue on. You see I am not alone anymore, I have a friend in Jesus who is always there for me.

God sent his son Jesus and he suffered the utter sacrifice and pain and humiliation of being nailed to a cross to die for us. Lets just take a second to imagine that suffering.

Apart from anything else, being a follower of Jesus I can look forward to heaven where there is no pain, no illness, no suffering.

"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away" Revelation 21:4

I ask at the end, after reading this you take some time to think through some things you have in your life, which may not be there if it wasn't for your illness or hard times? People. Lessons learnt. Opportunities.

Also have a think about what you believe, maybe look into Christianity a bit more and you never know what you might find.

Thank you for those who have helped in this post.

Hope everyone is having a good week
Bekz x

An update on my current condition with ME/CFS/Lyme coming soon...

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