Diary Of CFS/ME Spouse.

DIARY OF AN M.E. SPOUSE

As it appeared in the MEofOntario Newsletter in 2003.

By Ril Giles Copyright © 2003

I am the wife of a man you know. A man who suffers from Myalgic Encephalomyelitis (pronounced “my-al-jick” “In cef low- my- light-us”) otherwise more commonly knows as Chronic Fatigue Immune Deficiency Syndrome (CFIDS)

I am writing this account of our lives and sending it to everyone I know because I am tired of the stigma that is attached to this disease and how people seem to think it is “imaginary”, “not as bad as he is making it out to be”, “pretend”, “all in his head”, and every other excuse they use for not trying to understand this disease that has turned our lives upside down.

M.E./C.F.I.D.S. is an acquired complex and debilitating disorder that is characterized by profound fatigue, severe pain and cognitive problems that is not improved by bed rest and worsens with physical and mental exertion.

What does this mean for the man in our lives we all know and love? Well let’s walk in his shoes for a minute.

It means some days he can barely get out of bed physically, never mind hold down a job “to support his family”.

He is not “just depressed” and would not rather stay in bed, he is not lazy; he is physically unable to get out of bed.

On the days he CAN actually get out of bed and make it to another part of the house, the physical exertion he must give out just to do that is exhausting to him. He is not “just fat and needs to go on a diet” he is not “not trying hard enough”. If he gave up and didn’t bother trying, which he very often feels like doing just because it is so depressing to go through this day in and out, he would be bedridden completely and would never be able to do the small things he DOES do.

Getting dressed on a bad day is near impossible. On a good day, making a grill cheese sandwich for him and our daughter is a major accomplishment, and requires rest afterwards.

Yes, the division of labour in our family is different, but it was not always like that. Yes, I take out the garbage, and do all the laundry. Yes, I cook all of the meals, and wash the dishes; yes, I care for him and our daughter’s needs, like getting medications for him, and changing my daughter’s bottom when it needs to be. Driving him to doctor’s appointments, and the hospital, even the banking, I do it all. Not because he is lazy and can’t be bothered, but because M.E./CFIDS has made it this way.

I have had to accept that he can no longer help me with the laundry as he once did. I have had to accept that he cannot cook well anymore, because he forgets what he is doing or cannot physically stand at the stove or oven that long; that he will burn a hamburger on the barbecue, or cook a roast too long.

I am thankful that he can still come to the grocery store with me, to help me pick out our foods, even if we have to do small orders at a time because he gets too tired to walk home, or he can’t carry the stuff in the house. Things were not always like this though.

He used to do all the laundry and I folded it and put it away, he used to take out the trash and the recycling, he used to do all the car repairs without it near killing him physically and mentally. He used to cook a roast beef like no one I have ever known could, he once loved to barbecue. Now if he tries them, he needs my help to do them.

My husband used to walk many kilometres a day. We were an active couple, walking the boardwalk a half dozen times from one end to the other, after having walked there from our home more than a kilometre away and then back again; even while I carried our daughter in my womb.

We often went hiking along the shore lines of Cape Breton’s Bras D’or Lakes when we were first together; for hours we would walk, taking lunch with us and picking different plants and rocks and shells to take home and study through many books.

Always I would have to ask him to slow down, for my short legs could not keep up with him. Now he is the one asking me to slow down so he can walk across the road to the grocery store and keep up with me. When he does he has to push the stroller for balance. Now what takes me 15 minutes to walk, takes him a half hour if he can even do it at all on some days.

He used to push me to walk throughout my pregnancy even though I didn’t feel like it, because it was good for us. (And it was). Now I have to push him to walk down the stairs.

We used to roller blade, swim, ice skate. There was a time when our daughter was a newborn we didn’t have a car and we would walk everywhere for everything, to the store for groceries, to the movies, to the mall for some exercise and entertainment, to the park. Even in the dead of winter we hauled home our holiday presents in a snow storm on a December eve with a bundle buggy walking the whole way with a 10 pound baby strapped to his chest, Now he is lucky on some days to even be able to pick up our 29 pound daughter to get a hug from her.

It is an effort for him to put his socks on alone. I have to shave his face for him, because his arms are unable to stand the muscle spasms he gets in them when he holds them up to his face long enough to do it himself. He has baths rather than showers now because he cannot stand up alone well enough to wash his hair without fear of losing balance and falling in the shower.

Nobody sees these things but me, because I live with him on a daily basis. I am the one who lies in bed with him at night and holds him while he cries because of the pain and the pills that are not strong enough to kill the pain in his arms, legs, ribs, neck, back, head. I am the one who understands the loss of any livelihood he once had, the loss of his life as he knew it. The dreams we once had for our lives. We grieve for the loss of the house we wanted to build, the farm we wanted to have.

M.E./C.F.I.D.S. is called the invisible illness and it truly is.

Walking to the store no one sees the struggle it is for him as they pass by; they see a father pushing his daughter in a stroller with his wife by his side. They don’t see the pain in his eyes. They don’t hear the waver in his voice from the pain so severe he has to stop for a minute. They don’t know that if he didn’t have the stroller he might not be able to do it at all. Sitting and talking with him for a half an hour won’t show it either, because pain is silent. No one is around when he finally stops pushing himself to be “on” and when he crashes in bed for two days to try and gain back the energy he lost for your half hour visit.

I can see it though, I see it in his eyes that were once full of life and vibrant, now they are dim and tired. I feel it in the hugs he gives me that used to crack my back, and now he can barely lift his arms up over my shoulders to hug me at all, never mind crack my back for me.

You don’t see him take his time walking down the stairs for fear of falling down them; they don’t see him walk using the walls for support. They don’t see the pain he gets from sitting too long or standing too long. It is invisible; it is not like cancer with a bald head to show for the treatment. Luckily M.E./C.F.S. won’t kill him like cancer does to many who suffer through it, but instead he gets to suffer the rest of his natural life with this.

Many see a man who does not have a job, who does not shave his face, who wears track pants for comfort, and takes naps in the day. They assume many things, but they don’t see that he is a proud man who would rather go without shaving at all then ask his wife to do it for him on a daily basis. They don’t know that his skin actually hurts to the touch so much that baggy pants are the only way to even remotely be comfortable, if there is such a thing with this disease. They see him napping, or call to speak to him and he is asleep at 2 PM and don’t know that sometimes the pain is so severe it is just easier to sleep through it then to suffer through it, and with the sheer exhaustion there is nothing else he can do, if he can will himself to sleep at all.

They see him fiddling around with computers and wonder why he cannot or “will not” get a job. No one would take him for employment if he said: “Yes I can do the work, but what used to take me a few hours now takes me a few days, and I cannot guarantee you that I will even be able to do it without making mistakes, because my hands do not do what my brain tells them to do, and I could possibly fry your computer hardware accidentally from the sweats that come on without notice, and cost your company hundreds of dollars…oh and I have cognitive thinking problems so I may need someone to remind me constantly about what I am doing, because I can forget how to fry eggs and toast bread at the same time at home, let alone remember what windows update/system restore/hardware instillation I was supposed to do next.”

People assume he is letting M.E./C.F.I.D.S. consume him and that makes it worse, well yes it consumes him, but he is not willing it to. It just does. Running up and down the stairs five times a day it not going to make it better. It makes it worse. Physical exertion actually makes his condition worse because it causes muscle spasms in his body and they cannot stop. Once one muscle starts to spasm it moves on to the next muscle, and soon the whole body is cramped up and in severe pain.

Stress makes his condition worse. If we have an argument as most married couples do on occasion, that can make him worse. If our daughter cries or screams in a two-year old temper tantrum as two-year olds will do, it physically hurts him.

He sometimes suffers from insomnia for days on end though all he needs or wants to do is sleep! Don;t forget that that is how they torture people to get information from them, and he deals with it on a monthly basis.

I have not even really gotten to the cognitive problems of this illness yet.

M.E./C.F.I.D.S. is a physiological illness, involving neurological endocrine dysfunction, immune system dysregulation with involvement of the autonomic nervous system.

What does that mean? Well it means more symptoms in addition to all the other ones that I just mentioned above!

When my husband gets a cold, he does not just get a cold like you or I do for a week and then it is gone. He has a compromised immune system, it harms him more.

You know all those news alerts about flu viri and other sickness spreading across our region and the warnings for the elderly, small children and people with compromised immune systems? Well that is now a concern for our family, as I have a small child and a husband with a compromised immune system to worry about. I worry that he could get deathly sick and end up in the hospital… yes.. even die….( but he’s just faking this right!)

Yes, I do worry that he could die and leave me alone; I worry that my child could be without a father. I worry about the West Nile Virus; I am worried about SARS, especially since we are in contact with his mother daily who is a nurse who is working a SARS unit in her hospital right now. ( this was written at the peak of the SARS episode in 2003)

His brain tells him he is over heated and his body will start to sweat profusely without notice, just a shiver and then sweat like he has run in a marathon. Not only is it uncomfortable but it is aggravating, and frustrating to not have any control over ones body. Shivers soon follow afterwards without the ability to get warm. The brain is a wonderful organ isn’t it? When it works right!

This winter so far he got a cold that lasted for over four weeks, it lasted so long it turned to pneumonia in his lungs, he coughed so much that he cracked a rib from coughing and was laid up for weeks in extreme pain with his illness AND a cracked rib. It has been over two months and his ribs are still sore.

His nervous system is affected which causes spasms of the arms and legs when at rest in bed. He jumps nearly out of his skin without his control, and it is all caused by this illness-this stupid, life strangling, relationship smothering illness. The water falling from a shower can cause burning and stinging on his skin that he cannot tolerate the shower anymore. What a wonderful nervous system. ( But He’s still faking this right?)

Of course, he is sad most days; he cannot do the things he once could do, I am sad too. He is told by many that he is not as bad as he really is from their view point. I had to take him to many different doctors before I found one who believed him when he said he felt that way he does. I noticed this illness before he even did, and he is still largely in denial, making his symptoms worse by trying to do too much in a day and wearing himself completely out.

I guarantee you, if you sought out anyone else with this disability and asked them, they all have been through the same ordeal, unless they were extremely luck to find a doctor on the first shot who listened to them.

My husband did not seek out a “quack’ doctor that would believe his story and say what we wanted to hear, so he could get a “free ride in life”, or a “ticket down easy street.” he endured test after test to rule out life threatening illnesses like MS and Lupus, and Brain Cancer and.. the list goes on and on.

I searched and found a doctor, because I saw what this disease was doing to my husband’s life, to my life and my child’s life, and I wanted answers. I was not going to stop until I did find one who believed in it. This is REAL even if you refuse to believe it!!!

The symptoms can vary in intensity with each individual. My husband happens to be one of the more severe cases of it. For many, as it is for my husband, M.E./C.F.I.D.S. causes negative social and economic consequences and often results in long-term if not a lifetime disability. Loss of friends and family support because they cannot understand why he cannot ride in the car for so long to visit, or why he cannot come to a party, or has to leave the room at a gathering of large amounts of people with a lot of noise.

That leads me to the cognitive problems this disease causes and adds to the already hard to live with symptoms.

There’s the short- term memory loss. Like “Where did I put that pencil?” (Behind his ear). Forgetting to take his medication on time, forgetting how to make certain foods, or where in the process he was at in something as simple as loading the dishwasher. (“Was I putting away clean or putting in dirty?”) simple everyday things that you and I take for granted.

He is hard to talk to sometimes because he forgets what he was saying in the middle of saying it, and cannot get it back. He cannot remember what the right word is to explain something, He mixes up words in his speech and sounds like he is backing talkwards. This may be funny on some occasions and we will laugh, because there is nothing else you can do, but it is very frustrating and he often says he feels “retarded and stupid” when this is all out of control.

He cannot do calculations in his head like he once could, and for a man with such intelligence that is a hard thing to deal with. This disease actually lowers IQ levels from its symptoms. What fun!

His headaches (migraines of which he has suffered from for many years) are worse and harder when they hit. It is hard for him to cope with any noise, light or smell when they come on. Sometimes just the smell of underarm deodorant can set his head spinning and stabbing with pain.

Something called “brain fog” among M.E./C.F.I.D.S. sufferers is most of what I have just described. “Sensory overload” is something else they all have to deal with and bothers my husband a great deal.

If you are sitting reading this right now you might hear a hum of a fan or the furnace, you may have radio or TV on in the background; a child might be playing with a toy, perhaps, there are two other people having a conversation behind you, and a fire truck runs by with it’s siren on.

You and I can handle that because our brains function well and are able to filter out the unimportant sounds to our task of reading this. We can read without interruption. My husband is unable to do that and can hear all those things at once and gets overwhelmed by them. Add in the smell of dinner in the kitchen and the twinkle of the lights from the TV on or a Christmas tree, and he gets sensory overload and will become completely exhausted in a matter of minutes and have to go lay down. That is why he might eat Thanksgiving dinner at the kitchen table instead of with us, or in bed instead of with a room full of people. Why at a family get together he disappears for a little while to be alone. Why he cannot go to a restaurant AND a theatre for a movie in the same night without being completely exhausted. He is not anti social, he is in PAIN!!!

I am sure there are some of the things I am forgetting to write about, as it is so complex I am bound to, but hopefully you get the idea.
So what causes M.E./C.F.I.D.S.? Well they are not really sure. The medical scientists who have studied it think it could have been from a virus from an insect, or from an illness like mononucleosis, which has been recently ruled out, or from foreign water in another country while on a trip. There are so many speculations that no one who has this is sure. It affects the brain and the brain affects the rest of the body, and as we all know there is so little we understand about the brain that it is difficult to pin point the exact cause of the myriad of M.E./C.F.I.D.S. symptoms.

Maybe my husband got it from living near a toxic waste site. The Coke ovens and Tar Ponds in Sydney, Nova Scotia. Maybe something foreign to his body that I had been exposed to all my life ( because I grew up in Cape Breton) affected him, so it didn’t bother me and an antibody I created and passed onto our child through genetics and breastfeeding protected her as well? It is quite possible that having lived in Cape Briton could be the cause and it now is slowly killing my husband.

What’s the cure? Well, there is none.

How wonderful is that?

Want to be like my husband and not worry about work? Want to live off of a disability income from our government system?Sounds so laid back and stress free eh? Want to be told that the medicines that might help are not covered by the system so he just has to deal with it? Want to know that not only could you never walk through Disneyland because of this crappy illness…but you’ll likely never be able to afford to take your child there anyway? Want to have to juggle the bills every month and rely on food banks and being VERY frugal about your habits in order to get by month to month and keep a roof over our heads and lights and heat on and food on the table?

Yes, this is such a great life of leisure! He gets driven everywhere he goes.. he’s so pampered! How about not being able to drive most of the time because it hurts your arms and legs to operate a vehicle, and if you did try to drive you might end up with brain fog and not remember how to put your foot on the brake at the right time?

Do I Sound mad!? Your damn right I’m mad, I’m mad that I have to watch my husband in pain all the time. I’m mad that I have to watch the hurt he feels when his own family tells him he a liar and a cheat and faking to rip off the system. I’m mad that our society in general does not understand this. I’m mad that there is no support out there for me as his caregiver and spouse, and there is barely any for him as the person with it. I’m mad that people look at me and ask me why don’t I go out and work at least.

I don’t go out to work, because what little income I could bring in would be spent on caregivers for him and our daughter while I was out working, since he could not effectively care for her on a daily basis while I was out working. So instead I chose to care for him myself, as no one else can, and deal with living on a small income. We had plans and dreams, and maybe one day when our daughter is old enough to be self sufficient at home with daddy I could go out and work, but for right now it is hard enough for me to deal with this let alone hold down a job too. The stress is just too much as my own therapist can verify- and THIS job is a full time one.

Don’t get me wrong, I am not complaining. I love my husband, and it hurts to see him go through this, and to go through it with him. I do it because I love him and because he gives me more in my life than he will ever know. He is everything to me, and I cherish him, and I am willing to stay home and care for him and our child, so we don’t have to pay for day care for our daughter while I struggle at a low income job to make ends meet just to come home and be tired from a long days work away from him, and then have to care for them both, then as well until I leave to go out again the next morning.

So why did I just write all of this? Because it needed to be said, because up until now, everything I’ve said to you has fallen on deaf ears.

Am I asking for sympathy for our situations and my husband? No, absolutely not!

I am asking for understanding. Simple and plain old understanding for the disease and for how it impacts our lives…and maybe some actual COMPASSION for a member of your family, or your close friend!

We have a lot to be thankful for. For one…that we live in a country with health care and a social system that will support us even if it is small amounts monetarily since my husband is disabled.

We are thankful for the things we do have in life. Thankful for our child, whom we love more than life itself. I am thankful that at least I am not going to lose my husband from this disease as if it were cancer, and I am happy that he is here with me-and Thankful that we wake up every morning to a smiling face of our child who brightens our days.

Now I am thankful that you have read thus far and hopefully have the understanding and compassion of M.E./C.F.I.D.S. and how if affects our lives. If after reading all of this you STILL don’t think this is real.. then please go away, we don’t need your negativity in our already stressful lives. We just wish to live as peaceful a life as we can, to minimize his pain and to make the good moments in life be what we focus our limited energy on.

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Written by Ril Giles
Copyright 2003

Ril Giles is the owner of www.nurturedmother.ca and “SuperADDmom” Blogger. She resides in Ontario Canada with her Husband of 11 years and their two children.

She has been caregiver to her husband, who has been living with severe ME for over 7 years.
Permission to share this article in newsletters and CFS related blogs to raise awareness is granted by the author, so long as it is done so in it’s entirety,
including this section and provided that you contact the author to let her know where you found the article and where you will be placing it.

Tags: cfs, cfs/me, Chroic Fatigue Syndrome, chronic pain