My Journey with CFS

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...

I thought it was about time I blogged about my suspected Lyme Disease and the new treatment protocol I am on.

Above is a photo of my mum, sister and I in Greece. The summer 1998 when I was bitten by a tick, while I was 8 years old. Since then my parents always said I wasn't 'normal'. I was unusually tired compaired to other children or to how I used to be, before the bite. If I had a sleepover I was ill for 2-3 days afterwards and needed alot of rest.

I had all the immediate symptoms of Lyme Disease - a 'bullseye rash' where I had been bitten on my arm and I had flu-like symptoms but not bad enough to take me to the doctors. I recovered OK. Looking back it's abit silly because once bitten, two weeks on strong anti-biotics and the infection is gone forever. Hindsight is a wonderful thing.

Aged 13 is when my CFS/M.E began. I had a specialist in Bolton and he was very interested in Lyme Disease as well (as a pure coincidence) because both illnesses present with the exact same symptoms.

He never seemed bothered which I had because he claimed it didn't matter and we just need to get me better anyway possible, so we thought nothing more of it.

Now in January 2012 I decided to drag it all up again, following my most recent relapse.

I began to research this Lyme Disease, and what I was reading wasn't fun.

I found people on the internet who had been told they had CFS but all along it was Lyme etc. so I got scared. Maybe I have been mis-diagnosed too. But what scared me most was if Lyme isn't treated and left to inhibit your body more and more, it can grow as severe as to be paralysed in a wheelchair (see the video below).

In addition to that since being 8 my health has been on a slow decline with more relapses. I was also showing more 'Lyme' symptoms recently -

Worse cognitive abilities
Blotchy rashes on my legs
Sensitivity to light and noise
Stiffness in joints

My parents attended a Lyme conference in Dublin and another in Carlisle. They learnt alot of useful information and found a clinic in Germany who do the tests. (We have read some NHS tests can give false negatives and we want to be 100% sure).

Those German tests came back 'inconclusive'.

Doctors will only give you a diagnosis on three points...

1) Symptoms checklist

2) Test results which show some kind of infection

3) You respond well to treatment and begin to feel better

OK. Well I'm on point 3 with the other two under my belt and feeling better on this treatment. But there is a long way to go, this is about week 6. You have to be having treatment for 18months+

At first I had a bad detox reaction. I had very bad fatigue and was permanently clammy and very hot for a couple of days. It was just the initial detox but I'm feeling better now.

I am on the 'Cowden Protocol' from NutraMedix.

A protocol based on herbal drops in 100ml of water. Theres different drops and supplements to have at different intervals during the day.

The idea is to kill the 'borrelia' - that is the bacteria in my blood causing this illness which is transmitted by the tick.

30 minutes before breakfast

30mins before Lunch

30mins before Tea

Bedtime

I received a whole folder on what to take.

You begin on 1 drop and slowly build it up. I am now on the max. dose 30 drops of some.

However, I am still on my Paleo/anti-candida diet it is still about getting the correct nutrition to heal/recover.

I am still researching and learning more on Lyme Disease so I don't know how my future is looking.

I try to stay positive.

Again, this is about awareness. So if you or one of your friends/family are bitten by a tick please go to the doctor!!

I would post a picture of a tick but they really make me feel uncomfortable to look at so maybe google it.

YouTube - Under Our Skin - Please watch this short clip of an American film about Lyme. It is more prevalent there & can be more severe.

Becky xx

Putting this down on paper was abit scary. How one illness can change a person so much.

I do often wonder who would I be, what would I be doing if I'd never become ill.

I got to a point last year where I was happy & comfortable enough to say,

"I'm glad I have CFS otherwise I wouldn't be the person I am today"

So today I thought I would look at "How has CFS changed me?"

Career

I started with career because I think thats what has changed the most drastically.

I used to dream of a job in fashion, basically like Rachel from Friends if I'm being honest. This high stress, glamorous, fast pasted life of travel and fighting to get to the top.

Needless to say that all changed, I slowly realised this wasn't going to be me. For a while I was in limbo like most 18 year olds without a plan. Until I started to look on my recovery from a nutrition point of view. I felt so much better eating wholesome fresh foods & avoiding all processed crap. I thought, there has to be something in this... *Light bulb moment* I want to be a Nutritional Therapist and specialise in patients with CFS! I researched it and I can work from home, open my own clinic and best of all I'd be helping people with the same condition as me! Afterall, who else is an expert in CFS if not me with 9 years first hand experience? I could totally be able to relate to these people and help them.

My physiotherapist Gail, is one of the driving forces behind this because aswell as being my physio she has had CFS and therefore, knows exactly how I feel each day and the circumstances surrounding my life. If I can help one person in the way she has helped me I will be very very happy.

So there we go, thats the plan. I am hopefully going to be studying again in January on my Nutrition course which I love. While I am learning I am also gaining tips to aid my recovery. Win Win.

Personality

As a person I feel CFS has made me stand out, I never feel like other 22 year olds. Sometimes I see a different side to the world, I don't spend my money on alcohol and going on mad nights out with friends. My money goes on organic food, bottled water and doctors bills. You end up with a different set of priorities to most people my age. Mainly because if I don't eat right and see these doctors I have nothing and what is life without health? Well without health, we don't have a life. Therefore, to me that always comes top of the list.

Having CFS at age 13 has forced me to grow up and mature quicker. I had to take control of the situation, my recovery and my life. I do feel I have missed out on my teenage years, those are the years to be carefree and have no worries.

I know people outside see me as 'odd'. Being a teen and still to this day enjoying fresh air, walks, holidays, good quality food, monkeys, Cockapoos, being quiet, reading, fashion, animals and learning is seen as abit weird. I do see how I am hard to relate to if you are a 'normal' 22 year old.

Do I miss being 'normal'?... Well yes, but then again what is 'normal' - this is me now, my normal.

Relationships

This is the slightly corny part. It's very obvious to say it's brought me closer to my family and friends but it's so true! Those few people are my main supporters and helpers in my life and I could not, hand on heart, function or do this without them.

CFS has helped me see the important people in my life, friends come and go and only one friend has been here the entire time since day one.

Keish, well Anissa to most people. She was there pushing me in my wheelchair at school and visiting me at home, and yes she's still here, now from 60 miles away building her own life but she always makes sure I'm OK and I know she will always be there for me, in the ups and the downs.

Keish & I on one of the few days I was in school Year 11 2006

Still here 2011

I cherish my friends/family who haven't been scared away by this illness, Rachael, Grace, Callum, Hannah-my sister and my Mum and Dad. I tend to surround myself with a small group of people, purely because these people get me. If you understand the illness you might understand my weird ways.

There is nothing more important to me than family, everything my family have done for me I can never repay, I am just eternally grateful.

My family 2010

My babies 2012

I won't lie this illness can make relationships rocky, I'm in a rocky part right now with a very important person to me. It's very very hard to know the illness you have inside you can bring so much pain to another person, and especially another person who cares about you. However, if you can get past the upset and hard parts this illness causes you and those around you, then you'll all have stronger relationships in the future.

I say "If you can get through this you can get through anything".

The Future

Has CFS changed my future? Well we don't know. I try not to dwell on that too much, I wish for the same thing everyone wishes for. A 'Happy Ever After' Wedding, 3 kids and a beautiful home. If my CFS is still a part of that, then I'll deal with it. I will always bat it back away.

SEVERELY AFFECTED
30%	Moderate to severe symptoms at rest. Severe symptoms following any physical or mental activity. Usually confined to the house but may occasionally take a quiet wheelchair ride or very short, gentle walk in the fresh air. Most of the day resting. Very small tasks possible but mental concentration poor and home study difficult. Children may be too ill to access any education at all. This should be respected and kept under review.

20%	Fairly severe symptoms at rest. Weakness in hands, arms or legs may be restricting movement. Unable to leave the house except very rarely. Confined to bed/settee most of the day but able to sit in a chair for a few, short periods. Unable to concentrate for more than one hour a day but can read for about 5-10 minutes at a time.

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