Bee, aka IrishTwiFicster as some of you may know her, suffers from M.E. and was the main inspiration for this fundraiser. Bee kindly agreed to put in her own words what living with M.E. is for her.
M.E., Myself and I.
Have you ever worked in a job you hated? Ever thought to yourself, “God, it must be nice to sit at home all day, and still get paid,” or “What I wouldn’t give to not have to come to this job anymore.”
I have done or thought all of the above. However, I have also worked in a job I loved. I loved the people, I loved the place, and I loved going to work everyday. It took me a long time to find that kind of job, that kind of satisfaction in my working life. Unfortunately, after working a lot of years in jobs I detested, when I finally ended up in a job I loved, it lasted only 18 months.
I never got the chance to go to college immediately after secondary school (high school) but I did eventually go back to do my degree. It was 4 years of going to college 3 nights a week, after a long day in work, but I graduated with honours at the ripe old age of 29 with a Degree in Human Resources. I graduated about 15 months into my new job, (the one I loved), and it was a very proud moment for me and my family. 3 months later, I left that life behind me.
It started slowly. I’d taken time off earlier in the year to recover from 2 consecutive ovarian surgeries. These surgeries were pretty standard for me – I’ve had 5 in total. But I’ve never had 2 in one year. A viral infection after the second surgery left me feeling exhausted, weak and aching for months, but I battled through it. The place I worked were very accommodating – they even had a rest room with a bed, where I could lie down during the day, should I need it. That’s how awesome they were. However, when I found myself needing to lie down more often than I was at my desk I knew there was something wrong.
I live in a village and I worked in the city. The train journey was never pleasant – overcrowded, I never got a seat, and it took an hour. So I was exhausted by the time I got off the train and walked the 15 minutes to work. My doctor told me to find a new job because the journey was too exhausting for me. But I was reluctant – I loved my job. So I began to get two buses to work so I could sit down on the journey. It didn’t help. The sleepless nights had started and again my doctor put it down to stress and exhaustion.
The diagnosis of ‘Stress’ is too easily handed out. It stuck to me for ages, when the only thing that was getting me really stressed was the bloody diagnosis! I knew it was something else . . . Every part of my body hurt and some days I couldn’t leave my bed. Instead of being a further burden on my employers I resigned. I had the option of returning “when I got better”. I’m still waiting on that day.
Six months after I resigned, I finally got a diagnosis that made sense. It sounds strange, but it was a relief to finally have someone say I wasn’t going crazy, I wasn’t making it up, that I wasn’t just being a lazy so-and-so. When someone asks you what’s wrong and the first thing you say is “I’m exhausted all the time”, they have a propensity to say things like “Me too and I have to work all day.” Ouch! That one hurts…
My husband (who is a Saint by the way), often says “If you had cancer, people wouldn’t question you.” He is right. But people understand cancer – as awful as that sounds. There isn’t even a specialist who deals with M.E. in the Republic of Ireland, so how am I supposed to think other people will understand it? I barely understand it myself!
M.E. is also known as Chronic Fatigue Syndrome, which people seem to think they understand better. Most M.E. patients hate the CFS tag as it makes people think you’re just tired. Honestly, I’ve had people say to my face “oh, that’s just where you’re tired all the time. Sure I’m like that too.”
There are a host of symptoms that accompany M.E. – some people suffer from a few of them, some people suffer from all of them. I can only tell you how it affects me – other people will have different symptoms. For e.g. Some M.E patients sleep a lot due to exhaustion, some people (like me) have chronic insomnia. When I do sleep, my body doesn’t gain any actual benefit from it – although the psychological benefit of actually sleeping does help. I feel slightly ‘normal’ after a few hours sleep, regardless of the lack of actual rest.
Muscle and joint pain is the other big symptom of mine. I get muscle spasms if I move a certain way, or lie a certain way. Every joint aches at some point and usually as soon as one eases, another starts. My whole body can go into spasm, causing a type of paralysis. Thankfully this has happened less than a handful of times – it’s not anything I’d like to experience ever again.
Doctors have fancy names for symptoms, like ‘Post-exertional malaise’ – which basically means if I walk from my house to the corner shop, it feels like I’ve run a marathon. I’ve often felt the need to sit on the road and just rest, although I’ve yet to do that. Using crutches helps, although I’m asked a lot “what have you done to yourself now?” This then requires an explanation of “it helps with the M.E.” which is followed by a questioning stare and a quick change of subject.
I have sensitivity to light, so yes, I am that person who wears sunglasses indoors, or in the depths of winter, and a sensitivity to noise – which is unfortunate since my husband’s only flaw is snoring!! ‘Brain fog’ is another charming side-effect. It’s almost like short-term memory loss . . .I can see what I want to say but I cant get the words out! It’s incredibly frustrating and I imagine it’s not that great for people around me. Especially when I can’t remember their names!
I consider myself a fairly positive, bubbly person, so it was a long time before I succumbed to the one side effect no one wants - depression. Almost four years of this disease wore me down and combined with the health issues I had before the M.E. (fertility issues) I let it get on top of me for a while.
There are a number of other symptoms that I endure, no less important than those mentioned above, but I could talk for hours and you’ll all have fallen asleep listening to me (while I’d still be awake). I get bored listening to myself talk about it sometimes. My aim with this piece was to tell you how this debilitating disease affects me and how it could be affecting people you know – people who don’t talk about it.
I hope you will help in raising awareness and funds for research into this disease. Feel free to ask questions – a better understanding is all most M.E. patients want – that and a cure would be nice.
And remember, next time you wish you could be at home instead of work, think of me and others who would love nothing more than to be back in the workforce, feeling like a contributing member of society… besides, the illness benefit is so not enough when you want to go clothes shopping! ;)
Thanks for listening,
xoxo
Bee
Gingerandgreen suffers from M.E. as do her family.
Bee kindly informed her of our fundraiser and she agreed to write a piece about living with me.
Gingerandgreen suffers from M.E. as do her family.
Bee kindly informed her of our fundraiser and she agreed to write a piece about living with me.
Christmas has always been a very special time for our family. I've been collecting decorations from around the world for more than twenty years, so we have to get the biggest tree to display them on; sometimes two trees. We make a big fuss of the children – two girls, now sixteen and thirteen – and cook enough food for a month long feast.
But Christmas 2006 was not fun. We were hit by a virus that completely knocked us all out. I was off work for three weeks, and when I began to recover, I was still as weak as a kitten. I remember walking the dog one day behind a tiny old lady with a bent over back; I watched in dismay as she got further and further away from me, because I couldn't keep up with her. The rest of the family felt much the same way, especially our youngest. She had just turned nine.
We recovered enough to go back to work and school – or so we thought. But my youngest daughter couldn't seem to manage any more. She began to cry every morning, not because she didn't want to go and be with her friends or because she didn't like school – she was just too tired and overwhelmed to cope.
She couldn't do her homework anymore; she dropped out of ballet; on family outings she couldn't keep up with us. She couldn't sleep. Her throat hurt. Her legs twitched and ached. She had fevers so often, and her tonsils swelled up so many times, antibiotics became a staple food. She suffered from strange illnesses we'd never heard of before, like impetigo. She spent so much time in the school sick bay, they set up her own routine for her – she would have lunch with her friends then go straight to the sanatorium for an afternoon of rest. We thought she couldn't keep up with school.
In the summer, we tried to go camping for a special treat for the girls. We set up the tent while they went off to find the bathrooms and some water. They were gone a long time.
Eventually, we spotted our older daughter struggling to piggy-back her sister back to the tent – the little girl could barely hold on. We got them back to us, and she lay down on the picnic blanket, unable to speak or move or interact with us in any way. It was frightening – we contemplated a trip to the ER; but we didn't know where it was or what was wrong. Finally, she was coaxed into drinking a little, then eating a little, and she seemed to come back to us a little, too.
That was when I sat in the doctor's office, refusing to leave until they had diagnosed our daughter properly. Many, many blood tests later, we had our diagnosis – ME/CFS.
Things have not improved with a diagnosis.
Our daughter became too heavy for us to carry around, so on the rare occasions we get to go out now, she is in a wheelchair.
She doesn't attend school. There is no way she could cope with the physical and emotional stress of a classroom. On a good day, she has an hour of home tutoring.
She doesn't have many friends. Even family occasions are just that – very occasional. Some days she can't eat, and always, bathing is utterly draining for her.
She is in pain all the time, and sometimes she finds it hard to think or remember anything. Her temperature spikes and she feels dizzy a lot of the time. If you have ever had a concussion, that is the feeling you get in your head when you have ME.
She is incredibly brave and wise now, but for a time, she would cry and ask 'why me?' - indeed, we all did. I still cry for her, quietly and privately, all the time. But what could we say, except 'why anyone?'.
Everyone in our family has been affected in some way – none of us have the same level of health as we had before, and the reason we can all empathise with her so well is because we all know what she feels like; from time to time, we all suffer from ME. Thankfully for us, not even close to the extent that our youngest does.
We have learned to count our blessings. She is alive; we are together; we live in a country with free health care, clean water and relative peace. We have food and learning and love. We say: “You are having a different childhood; but you are having a childhood, and compared to some, you have so much.”
There is no cure.
We have tried every remedy available to us, but as yet, there is no consensus on the cause of ME, let alone a solution. My heart breaks every time I see her pale face, her dark-ringed eyes and her slow, protective movements; and every time we have to turn down an invitation because she isn't up to it; and every time her sister has to give something up because we can't manage. But I am rendered helpless, because nothing that is available works.
The worst thing anyone has ever said to me is: “If it was my child, I wouldn't sit back and let her suffer like this.”
Do you have any idea how terribly much this helpless feeling hurts?
What would you do? What can you do?
Bear in mind every M.E. sufferer's condition varies Bee's and G&G's acccounts are just glimpses into millions of varying experiences with the condition.
If you suffer from M.E. or know someone or does and would like to add your own experiences feel free to email it over to fandoms4me@gmail.com
