The Rollercoaster Ride

A poem about living with CFS by Nicole

You look at me now and you may see a grin
But I'm a person who can't enjoy many things.
I suffer from that thing called Chronic Fatigue Syndrome
So most of my days are spent alone at home.
I can't go out like you do and have some fun
That's because I'm twice as tired when I'm done.
I don't recover like you do with one night's sleep
Sometimes it's like I haven't had even a peep.

But you don't understand and you never will
Unless you've had this and gone down that hill.
You go down so fast and don't know what's wrong
But the willpower inside tells you to hang on.
You suddenly realise your life has dropped
While people around you continue with theirs and never seem to stop.
They look at you and encourage you along
Because they don't see what's truly wrong.

It's a debilitating illness which is so hard to fight
There's no one way to get it, nor one way to make it right.
We suffer for ages trying all different things
When all the time, our life's hanging by strings.
Depression sets in and sets up home in your mind
It's the courage inside that one must now find.

So many times you feel like giving up
Running away from it in the hope it will stop.
But you can't leave now cause you're not well enough
Fighting this thing seems to be getting more tough.
One day you feel good and want to do so many things
But the more you do, the more suffering later it brings.
It's like a rollercoaster ride going up and down
One days it's all smiles, the next week all frowns.

We try to stay positive with all our might
But after such a long time, you feel like you're losing the fight.
No doctor can give a perfect remedy, nor specialists the elusive cure
So we live in hope and wonder how much more we must endure.
We see people with colds and flus complain
But a week down the track, they're all better again.
They don't understand how an illness can last so long
And judge the stability of our minds as being the part that's wrong.

Our friends who always happened to be there
All of a sudden have disappeared.
We can't go to parties or get together like before
So now they see us as unsociable and ask no more.
The invitations stop coming and the phonecalls are less
It's now you find out who your true friends are I guess.
Even when we have a good day
Our friends and partner have gone away.

Our world is one of loss and fear
While trying to stay strong and head clear.
We don't chose to live our days like this
Who would want to jeopardize career, friends and bliss.
So don't judge us by your first perception
Unless you know all about, or have suffered from this condition.

What helps us along is your compassion and understanding
A shoulder to lean on and sometimes a tissue to cry in.
So treat us normal, the only difference is our limitations
We're still the same people, with just a few complications.
I'll continue to fight and try my best
Then one day I'll be back to normal like you and the rest.
This is to help you understand how having this illness feels
And how your understanding can help me heal.

Nicole
Nicchan@hotkey.net.au

© May 1998 Nicole Chan

Saturday?...Sunday?....

After a very restless night due to the pain in my legs, I managed to drop off to sleep around dawn. I know it was dawn because of I could hear the birds. I awoke at 11:57 am. I rushed round like a demented mad woman. How could I have slept in..why didn't I hear the alarm? I was supposed to be at my son and daughter-in-laws for about 1:00 pm for lunch!!..and it takes me 45 minutes to get there. It usually takes me a good hour or so to get myself presentable and ready to face the world in the morning, so I thought I had done fairly well to be leaving the house half an hour later. Now I should have realised that something just wasn't quite right when I saw the post on the mat..but it just didn't register. By the time I had reached my local shops....a few minutes walk...the realization that something was terribly wrong was beginning to dawn. Why was the post office and chemist open? Had they changed opening hours for some unearthly reason? I know that the M.E. causes brain fog at times....but come on...the post office and chemist open on a Sunday....since when!!!??? Why hadn't anyone told me? That's when it dawned. It wasn't Sunday....it was Saturday. My brain had jumped a day. I have been known to lose days when I have been so exhausted that I have slept whole days through, but to totally miss a day out...that's never happened before.
This experience has left me totally disorientated. Was it due to the M.E. and brain fog?...or was it one of those "senior moments." This is one time when I hope it is the M.E.

I'm being over-run...

After a week of recovering from gardening and taking a trip to town I found myself again overdoing it. I can't help it. The promised rain was very short, but very welcome, garden wise. I had the choice of gardening or housework again. Gardening wins every time. My more recent hobby of card making has taken a back seat these last few days, but I must find time this weekend as I have three commissions to fill. I have spent the last two days weeding and digging borders in the back garden. My reward has been watching a pair of blackbirds diligently collecting exposed snails and insects, obviously for chicks.
My front garden is north facing so gets little sun and rarely dries enough to need watering. Lily of the valley has taken over, covering every available space between the bluebells. Beautiful as these plants are they are becoming a bit of a problem, spreading themselves out onto the small lawn. A spot of "culling" will have to be the order of the day when they have finished flowering.
My house is also being over run....not by plants...by cranes. I must stress that these are paper cranes. My youngest son (17) has discovered origami and has made a growing flock of differing sizes. This has given me hours of amusement...and amazement. He has always had a tendency to be hyper-active and gets bored very easily. Watching him conscientiously follow the instructions, and his delight at the results was amazing. Always a bright, academically talented boy means that he is always on the go, physically and mentally. Just being around him can sometimes drain me of energy. Two hours of silence and near inactivity is something very rarely seen in him. I just hope this enthusiasm lasts for a while, even though my ream of copy paper is fast disappearing.

Precious memories.........and road pricing

Yesterday, Thursday, was a somewhat strange day. My mind was swirling with mixed up thoughts and emotions. I'm finding this a little hard going today. After my day out on Tuesday my whole body is screaming at me...my fingers are burning and swollen and feel as though they don't belong to me.
First of all it was a day of happy memories tinged with sadness. It would have been my second son's 35th birthday. Matthew died 17 years ago in 1990 after an 18 month battle with leukemia. He was what everyone called a very likable lad. Full of fun, mischievous, with an infectious laugh, and ready to help anyone that needed it......so laid back that he was almost horizontal. He had many friends, and I can honestly say that I have never come across anyone who knew him that didn't like him. He loved his football and cricket and put all his energy into enjoying everything that he did. Every one he met was drawn to him....especially young children and even cats and dogs. I have known him to bring home a few strays over the years. Matthew is never far from my thoughts..but it is on days like these that I miss him the most. I consider myself lucky that I was allowed 18 years with him.....18 years of happy memories that no one can take away. The picture above is of Matthew and his fiancee Debbie, the last one that was taken of him. ( Debbie incidentally became my daughter-in-law when 7 years later she and son number 3, Ian, were married). It was his birthday and the hospital had allowed him home for just 24 hours. He was surrounded by his family and friends....got a little drunk...and even his doctors and nursing staff managed to attend part of the celebrations. The day was tinged with a little sadness as we all knew that it would be his last birthday. Indeed the doctors had not expected him to make it through Christmas, let alone his birthday. Matthew died the following June. There is so much more I could say about Matthew...but I will leave it there...he will always remain in my heart, never forgotten...always loved.


Every other Thursday a family friend takes myself, my eldest son (who is himself disabled) and his other half shopping to a freezer food shop. This is the only time I get to do actual shopping. Most of the time I have to rely on home deliveries or paying high prices at local convenience stores. Now this brings several points to my sometimes overloaded brain. One of them is the carbon footprint issue. My son worked out that by making this trip every other week costs the friend an extra 12 pence more than it would if he went alone. That makes me feel OK...that I'm doing my bit for the planet. If the planned road pricing comes into affect how will that affect the cost of this journey?? That is yet to be worked out. How will it affect the cost of online shopping? Has anyone even thought about that? There are a lot of elderly/disabled who rely totally on this service. Will such services be exempt from the proposed measures....and if not will the extra cost incurred by the company be passed on to the consumer, many of whom are on low incomes/state benefits.
Now as anyone with any common sense knows, it is important for anyone who has not got good health to try and eat as well as possible. Preferably fresh, good quality food. Again this has to be balanced with the availability of these foods, the cost, and being able to access them. Road pricing will mean that vulnerable groups will find it even harder than it is at present to be able to do this. This will mean that they are putting their health at even greater risk, and more strain on the national health service, (not that M.E. patients get much from that). I believe that it is not just the elderly/disabled who will be affected....low income families and people who rely on public transport will also feel the effects. Lots to consider and as yet some unanswered questions. There..I'll get off my soap box now!

Ladies what lunch....

It's Tuesday, and already I am exhausted. I spent a very enjoyable Sunday at my eldest son and daughter in laws. I go every Sunday as my 2 youngest who are at home are usually doing their own thing. My son doesn't live very far...it used to be a 20 minute walk...now it takes a good 45 minutes. This is ok on a fine day....not so good when it is raining and cold. I could take the bus I suppose, 2 buses, 5 minutes journey on each, but the waiting time between buses means that it takes an hour for the journey. I ended up helping my DIL with a little weeding of the garden. Big mistake really on my part...Monday was spent regretting it.
Today I went to meet my friend who lives on the other side of the city. We have lunch and talk about anything and everything. These meetings are enjoyable but tiring. It's a case of do I go and be extremely tired for a few days, or stay at home and forget about having some sort of social life? The answer is obvious..the latter. This is the fine balancing act that many people who have M.E. have to consider. We don't always get it right..but hey.. we need a life as well. Tomorrow will probably spent resting and getting frustrated that I am not able to do some of the simplest tasks. It's at times like these that I try to remember what my mother used to say to me. "The housework isn't going anywhere, it will still be there waiting for you" Wise words I think.

Bat ears and bluebells....

Pictures are of my 2 youngest sons (17 and 23 now!) and Tess.

I've done it....well almost. I managed to get the back garden looking a little more presentable. At least I can now see the plants that I have got in there. There's still some work to be done though. It's a bit like painting the forth bridge, as soon as I've finished I have to start all over again from the beginning. My eldest son has visited today and came up with some ideas for making my garden a little easier to manage. He knows I love gardening but also appreciates that I can no longer spend the energy that I used to on it.
The weather is certainly holding, and it is days like these that I really miss having my dog, Tess. She was my faithful companion for 15 years, and we spent many hours walking in the nearby woods in all the seasons. At this time of year the bluebells are beginning to flower and form a haze of colour beneath the trees. It is a beautiful contrast to the railway line and motorway that can be intermittently glimpsed between the trees. There is a stream which runs down from the golf course at the top, and wild garlic and lily of the valley can be seen there. I have these plants in my garden but they don't look as impressive as they do in their natural setting.
Tess was a little border collie cross with bat like ears who never asked for much, but gave me and my family a lot of pleasure, always a willing participant in a game of football, or a fielder in cricket. She was so patient, especially with my grand children, and never complained when they grabbed her tail or ears when they were starting to take their first steps. Tess was my friend and confidante...I knew she would never tell my secrets to anyone!! I used to walk her twice a day except when I became ill. I still managed a short walk with her...indeed she was sometimes my reason to get up and about in the day. This is one of the things I especially miss. I have thought about getting another dog, I've always had dogs...and cats... in my life, but on reflection it would not be fair. A dog needs exercise and I cannot commit to that now. I am considering a cat though. Cats still need to be cared for but they do not need the commitment of daily walks. A cat would give me the incentive that I sometimes need on bad days.

Stubbornness or common sense?

After Monday's excess of physical activity I'm now paying for it. I knew I would..... but I still hope that one day it won't happen. The pain is draining....physically and mentally.....I can't sit or lie comfortably for more than a few minutes. Walking is like having metal limbs that have long ago seized up and now need some sort of lubricant to make movement possible. Going through my mind is the fact that my pain is not all down to the M.E. My family has a history of rheumatoid arthritis and osteoporosis. My older sister (by 15 months) is already severely crippled by both of these conditions and my younger sister (by 13 months ) is also on the same path. They both started to feel the effects of these crippling conditions at the age of 48...the same age as my mother started. I thought that I had escaped this fate....but I'm beginning to wonder now. The swelling that accompanies the pain in my hands, knees and shoulders is not usually present with M.E. My stubbornness tells me that this is not happening....I'll be OK in a couple of days when I've had more rest......my common sense is telling me to go to my GP and get this checked out. At the back of my mind is the memory of my mother's suffering, that lasted for 20 years with these conditions....and would have suffered longer except for the lung cancer which took here life 16 years ago....just as it did her father....a grandfather that I never knew.

Cut the grass

It's been another glorious day weather-wise. I took the bull by the horns and cut the grass in the front garden. When I say cut the grass, what I really mean is cut the grass, raked up the cuttings ( a full black sack worth) , trimmed the edges and weeded the borders....well I did say earlier that I was a perfectionist! I know I'm going to pay for all this physical effort....but what has to be done has to be done. The weather forecast is for rain for the next couple of days so I feel justified in my actions.....and I really enjoyed doing it. I can see where my plants are now. Just got the back garden to tackle next..and that is about 5 times bigger than the front. Well I should be reasonably rested by the weekend when fine weather should be with us again. One of the many mysteries of life and gardening is the fact that the lushest, greenest weed free grass always grows where you don't want it to.....and no matter how careful you are about removing shoes before going into the house, grass always manages to find it's way on to the living room carpet. That's another job that will have to be done.....tomorrow.....perhaps.
Now I think a nice relaxing soak in my favourite bubbles is my just reward.