Daily Living with M.E.
© 2007 Theresa Goodell
Copying permitted if all material is kept together and authorship acknowledged.

Day to day living with M.E. is as individual as the disease process is for each. However, sometimes our family and friends don't stop to think what it might be like to go about our responsibilities with constant exhaustion. One of the best descriptions I've heard is the comparison to the flu. When one first comes down with the flu, one experiences swollen glands, achy muscles, exhaustion beyond mere tired, inability to find a comfortable position and an elevated temperature. Most people with M.E. experience these same symptoms to one degree or another every single day! And since the "outside world" often doesn't recognize we feel as badly as they do when they get the flu, we learn to be actors on a stage for their benefit. We don't want to bring them down. We don't want to be a wet blanket on the fun. Most of all, we don't want to be disbelieved and we don't want well meant but often silly advice. What we'd really like is understanding. We'd like people to understand that long, complex paragraphs of verbal communication are too difficult for us to follow when our brains feel as if they are stuffed with sand. We need simplicity, just the way they do when they have the flu. We need our friends and family to understand that we'd have done up the laundry but our legs felt like 100 pound weights and it was so hard to catch our breath, we couldn't drag those weights around with us for long enough to gather the dirty clothes, put them in the washer, change them over to the dryer and fold them before putting them away. We wish people would understand that going to the grocery store is a major undertaking. For those without wheel chairs, it means being able to get suitably dressed for public (sometimes an almost impossible undertaking of it's own), then drive to the store, park, walk to the store itself from parking, drag our bodies plus the shopping cart around the store reaching and lifting that which we need from the shelves. After we've exhausted ourselves with this process, we are required to stand in line, pay the cashier, then tote the groceries out to the car. We still have to load the groceries into the car, drive home, unload the groceries and put them away! We want folks to understand they NEVER have to do this when they have the flu, but because our condition is long term, we do! Instead of judgment for not doing it, wouldn't it be great to get Kudos for getting some of our jobs done? In fact, it would be terrific if someone would notice we'd gotten out of bed and gotten a shower!

When we first fall sick, we're told we have a virus. We go to bed, drink plenty of fluids and hope we'll get well soon so we can go about our lives. After a while we find we're not getting well. We go back to the doctor and ask for more advice or medicine, or something to get us up out of the bed and back to life. We've just started the long, long journey to diagnosis of M.E. Some of us spent years trying to find out what was "wrong" with us. Some of us were sent to psychiatrists to handle our "hypochondria". Some of us were given antidepressants for our "clinical depression". Some of us were flat out told we were faking and to buck up and go about life. We traveled from specialist to specialist, sure we had a terminal disease for which no one had bothered to look. Other's were luckier and were diagnosed right away. Many of us were given lots of medication. Some were given none. We lost friends, one by one, as they dropped away not understanding why we couldn't cope the way we had before. We endured lectures and well meant advice from family members. Some lost husbands or wives. Our children were confused about why we no longer participated in their lives and many of them acted out in ways over which we had no control.

Somewhere along the line, a doctor said the words Myalgic Encephalopathy (ME), Chronic Fatigue Syndrome (CFS), Post-Viral Fatigue Syndrome (PVFS) or Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Some of us blinked and said, "What's that?", other's of us knew what it was and had wondered if that's what was going on with our bodies. It was a relief to finally get a diagnosis! In our society, we know with a diagnosis there is help. Only there really isn't with M.E. There are treatments but in the end M.E. has so many faces, is so individualized, treatment is unique to each patient and must keep changing as the disease changes.

Relief for an M.E. sufferer is short lived. Frustration sets in as soon as we find we are not going to get better and another long journey commences; the journey to find the treatment protocol that will work for us, individually. More friends drop away as we try treatment after treatment and medication after medication, some with horrific side effects. Marriages change and the roles of husband and wife must change and parenting becomes and exercise in creativity. Going to church becomes something we can manage on a "good day", so even if we've had a strong supportive church life, that begins to fade too. Some end up with disability benefits that help with the rent and food. Some end up being told they are fine, to go get a job. I wonder how well those examiners would do working 5 days a week with a permanent case of the flu?

Recently, I asked some people with M.E. to help me out with this article. I asked them to describe a typical trip to the grocery store.

"I get the trolley and then get what I need. I may have to get a coffee as I need to sit because of pain and weakness, also my legs play up and go dead on me. Then it push the trolley to the checkout I normal get help to put shopping into bags but if not I do it. I Pay for the shopping and then push a much heavier trolley which has now a mind of its own. I struggle here sometimes if the car's not as close as I normally get it. I, then, put the shopping into the car and take the trolley back. By this time my body is screaming to sit down, so the car is a godsend. Then it the drive home and then getting the shopping in. If I've too much I leave it in the car and go back after a rest and cup of tea."

"My husband does the weekly shopping. I go with him to do the nice bits of shopping if I feel well enough, but I soon tire and have to come home. We usually try and have a coffee stop/ lunch stop for about 30-40 minutes."

"I don't do the shopping. My wife does all the bits at the shops around the corner while I stay home with someone."

These people would really rather do their own shopping. These people would really like to shop and then still have the energy to put the groceries away and fix a meal. But, they can't. The energy just isn't there and the pain is monumental by the end of the trip to the grocery.

What about some of the other activities "normal" people take for granted? For instance: How does one buy new clothes? This is more of a necessity for someone with M.E. than the "normal" person because of the weight fluctuations which come with this disorder. Again, I asked my friends how they managed.

"My wife knows my measurements, so if she sees something she thinks I would like, she will get it."

"I now buy online"

"Well U buy most of my clothes at ASDA and I don't try them on till I get home. If they don't fit, I usually take them back on my next shopping trip. I also use mail order catalogues."

"I shop at ASDA and Tesco for clothes . I know what size to buy and just grab what i like off the shelf."

"I use catalogues and the internet so I can try the clothes on at my leisure. I can't cope with changing rooms etc in shops and just getting dressed requires assistance."

Shopping is a little thing compared to raising our children.

"When I was first ill they were all little. Bob had his own business which he had to give up (something I have always felt guilty about) to help me look after the children."

"Its easier now there older, they've both grown up with me having M.E. in the earlier days i found it really hard, but then mom took over a lot as she was fit back then".

"The kids take care of me more than I of them".

"I have a lot of help from my husband and a childminder one day a week gives me some slack. I don't do much in the way of housework and I try to keep what energy I have for looking after my daughter. I go out with her every day which means I can sit and have a cup of tea and almost have a break from looking after her which I need, even for an hour or so".

"This is a bit of a nightmare for me! My son is 3 years old. He sort of understands that mummy runs out of energy and that I've got to get my puff back. I have a childminder 4 days a week and a retired couple look after him the other work day this is from 8.30 to 5pm. I look after him from when he gets up (4am onwards) until he leaves for the childminder. Hubby gets up for work at 5.30 to leave by 6.20. breakfast is a breakfast bar or fruit that doesn't need preparing. All his clothes are elasticated as I can't do buttons easily and his shoes are velcro. Any spills or accidents are left as they are where possible to save energy while he is around".

These parents didn't have these support systems in place. It took planning and a lot of red tape to get the childminders in place. It took family understanding for mothers and fathers to step in to help out. I often wonder about those children who live in families where this kind of support can't be found.

M.E. is invisible. To the outside world a person with M.E. looks healthy and sometimes even radiant. What they outside world doesn't see is the world inside, behind our closed doors. The outside world goes to bed with the flu and doesn't get up until it's gone. A person with M.E. has no choice to to cope as well as possible in a world created for healthy people.

For those of you readers with M.E., life is not as hopeless as it may seem. There are things we can do to create a world where we "fit". There are things we can do to help ourselves keep a positive outlook and rebuild our lives around the M.E. It takes time, effort and creativity, but it can be done. We can Pace. We can work on changing our outlook, "Thinking ourselves into a better place". Adjustment is an article written for adjusting to Fibromyalgia. Some researchers believe Fibromyalgia is the "other end" of the spectrum from Chronic Fatigue or M.E. They believe they are one and the same disease process. The article really works for any chronic condition.

For those of you "normals" who are reading this, just imagine what you're life would be like if every single day for the rest of your life you will face your day with the painful Symptoms of M.E. Then I hope you'll sit back and think to yourself, "What can I do to help? How can I be the best support?" And when you ask? Please make it simple. It's so difficult to follow conversational subtleties when the Brain Fog is thick.