Coping with M.E., a Young Family and Twins!

image

 

claire_barnett

 
 

After suffering Viral Meningitis six years ago things have never been the same...

 

Having always been active, happy-go-lucky, independent and hardworking, the above hit me like a steam train. In May 2007 my life was about to make a dramatic change whereby things would never be the same.

A hardworking mum of two boys; managing budgets and resources for the National Health Service, an athletics coach in the evening and a volunteer Child Welfare officer for the England and Wales Cricket Board, my life was pretty much full on.

It was a normal Tuesday in what I remember as a very warm May of 2007. I went to work as normal after dropping the kids off at school. I felt really off colour, just not right at all, but none the less I just got on with my job and went to my athletics coaching in the evening, taking my eldest son who also trained at the club. Thinking I was just coming down with a summer cold, I persevered in training my group. Throughout the week I got worse and I was sent home from work after collapsing and wetting myself; this progressed into me not being able to move the left hand side of my body. By the weekend I was in intensive care with tubes coming out of literally everywhere and doctors not knowing what was wrong with me; they suggested I may have had a stroke at only 30!

After being pumped full of all kinds of medication, going through test after test and body scans, it was realised I had Viral Meningitis. After weeks of recuperation I returned to work and eventually to my sporting activities thinking all was normal, but little did I realise that things would never ever be the same.

My daily life became a struggle. WHY? I had recovered, or so I thought. I was in constant pain in both my head and body. My head was banging like I had never known before. I had arthritic-like pains in my joints and found it hard just to walk, let alone run, my face was drooping, my eye watering. I could hardly talk, and when I could my words were slurred. I knew what I wanted to say but something else would come out of my mouth. Then came the blurred vision and dizziness. Trips to the doctor just became pointless as no one understood. I would be sent away having been told I was over tired and clinically depressed and that I just needed to give it time. All very frustrating so I just GOT ON WITH IT.

I started to make big changes in my life, actually believing I was emotionally and mentally not right. I cut the wheat from the chaff in terms of fair weather friends. I have some amazingly good close friends and life really is too short to put up with leeches. I decided my marriage wasn’t working and that we had just grown apart and really were heading in different directions. At times being married was like having another child, and for once I needed looking after. So I ended it and got divorced. I changed departments at work; I took a holiday alone to visit my family in Spain. I even left the kids behind for the holiday, something I had never done before. I had never been away from them overnight before (other than my hospital stay), so this was a big change for me.

Throughout all this I was still having a secret battle with my pain. Emotionally it drained me because I started to feel that it was all in my head. Was I imagining it? I put it down to the emotional stress I was under and thought things would be better soon.

But just ignoring the problem and pretending the pain was in my head only exacerbated the problem. It all started to mount up. I was pale, tired, washed out. I couldn’t be bothered with my personal appearance. I was literally just dragging my weary body to my next activity.

Enough was enough. One night I was coaching in the rain and each raindrop felt like someone was flicking rubber bands on my face. The rain felt how I imagine acid burning through my skin would feel. Then it went into my hands and wouldn’t go away. I finished my class, drove home and cried. Even a warm bath just couldn’t warm me up or ease the pain.

That night I couldn’t sleep, my legs were like dead weights. My neck and behind my ears ached so much I could not hold my head up. I practically crawled into the doctor’s surgery in absolute tears. It was a locum and I thought what is the point and sobbed. But this time, this stranger actually listened. He took time to read my notes; he put two and two together and referred me to the hospital and to a neurologist. It was only then, after all that time of being fobbed off, that it was confirmed I had M.E. and brain damage as a result of the Viral Meningitis.

Just that diagnosis in itself felt like a cure. Just having an answer to my suffering and that I wasn’t imagining it all. I was tried on different medications for the pain and given High Flow Oxygen to take at night or whenever the pain became bad. It helped but never cured. Then my new partner Paul and I found out that we were expecting twins and I had to stop all tablets. My pregnancy was draining and HORRIFIC but I managed to go to 37 weeks, and for that I am grateful.

I gave birth to two gorgeous girls who even now, at nearly two years of age, do not sleep, which has an added impact on my health but I just have to manage. They push me to my limit but they make me laugh and honestly, keep me going. I have lots of help around the house and people have to take me as they find me.

 

“Dull women have immaculate homes” Anon

 

I am totally laid back and some ask how I remain so chilled out. A few weeks ago the local vicar, my friend Joanna, came round for a coffee and one of the twins was sick all over me... she panicked then laughed as I just took it in my stride. Life is precious and crying over spilt milk gets you nowhere. I have seen death first-hand, watching my dad take his last breath when cancer robbed him of his future. We should just embrace the life we are given. I do have my spats but usually when I am seriously over tired, just like anyone.

If one twin is sick they both have to have their clothes changed, they have to be the same. They run off in opposite directions at playgroup when it is time to go; I simply scoop them up in each arm while they scream “Help me, help me!”; it really is comical.

In fact, only last week, on the morning of my wedding, I burnt a hole in my wedding dress because I had a momentary lapse in concentration... I set off in hysterical laughter. I was just happy to feel well that day. A dress is a dress.

My boys know when I am tired or in pain when I try and chastise them but slur my words. They make a joke of it, not maliciously but simply to ease my embarrassment.

I don’t or haven’t up until now discussed my illness with anyone but people close to me. My nearest and dearest know the score, but it isn’t something I am either proud of or broadcast. I really do just get on with it.

It is hard to explain why my eye droops or why I can’t get my words out, but I just make a joke of it. Paul says “Hurray!” when I can’t talk, because then I can’t moan at him!

Some people who don’t know about my illness don’t understand why sometimes I really am tired or tearful. I have been asked by people what my oxygen is for; I joke and say it is a Chinese remedy for youthful looks that clearly isn’t working.

People close to me know my triggers and just tell me to rest, especially my mum who is one big kid and likes any excuse to get the kids to herself to cause trouble with. My very good friend Trish was concerned about me today as my spelling on my text messages wasn’t the best and she thought I was having an episode... the actual fact is yes, I am feeling rough, however I have cracked the touch screen on my phone and it types what it wants. It made me laugh and it is nice to know people care. Anyone else would have just thought how dippy is Claire?

Although life can be a challenge at times, I just try and be as normal as possible. I have to plan things in advance and how to factor in my rest. I can’t do the all-day shopping trips anymore, although I give it a good go but pay for it afterwards. When I’m bad I can’t even stand in a queue, let alone trail the racks of shoes and clothes (thank goodness for internet shopping!). Sometimes just standing watching my son play football causes me pain.

It is a shame; my eldest son loves shopping as much as I do, but recently, on a trip to the shops, I just couldn’t stand the crowds, my legs became like jelly and my head started pounding. I had to come home. I don’t drink alcohol any more, which my friends find hard to believe because I used to be a party girl. I was very partial to vodka, lime and soda but the hangover recovery time now takes me over a week and makes me very sick, so I just have the lime and soda now.

We have just returned from New York City where we got married, and although the wedding was amazing, the trip and our daughters really took it out of me. I am truly paying for it now. Totally wiped out mentally and physically with no sign of reprieve even after a week’s rest.

My school English teacher once said to me, “Life experiences are what make us or break us!”

M.E. could have broken me, but instead it has made me truly appreciative of what and who matter in my life. I have to know my boundaries and, as terrible and debilitating an illness it is, I am genuinely blessed with my beautiful family and I would NOT change any of it.

Life really is for living and what you make it. There are two choices in life: fight it or embrace it. Make the best of what you are given.

 

“Worrying does not empty tomorrow of its troubles,
it empties today of its strength” Anon

 

 

Back to Top ↑

 

News

1 May 2019
Awareness Ribbons
30 Apr 2019
Biomarker for 'CFS' identified
30 Apr 2019
Go Blue for M.E.
13 Apr 2019
NIH Conference Videos
13 Apr 2019
CFS/ME National Services Survey
6 Apr 2019
Forward-ME Update
6 Apr 2019
Phase 3 Rituximab Trial
1 Apr 2019
Anniversary Statement
29 Mar 2019
M.E. Organisations
26 Jan 2019
House of Commons M.E. Debate