I was diagnosed with fibromyalgia almost 15 years ago now, and as soon as I was diagnosed I went online to research everything I could find. What I found was not a lot of information. Unlike now, there really wasn’t much on this disease at all then.
Every morning I put on my face and didn’t let anybody know how bad it was. There were days I was so tired I honestly do not know how I coped. Every day I laughed with my coworkers, giggled with my kids, kept up with my friends and was a good partner to my husband.
The literature I found on the disease really did not give me an outlook on what the future would be like. There was nothing in anything I read to let me know that gradually over time it would get worse and worse, that every day would become a struggle, that my house would be a mess on a constant basis and that there were some days I would barely make it out of bed.
And, the literature never told me a lot of the things I’m going to tell you about now – the following 10 things that probably surprised me the most. Little did I know that within 11 years of being diagnosed, I would no longer be working as a result of conversion disorder which super-sized my fibro, that falling up or downstairs would become normal, that every morning I would need an hour and a half just to be able to push the pain back enough to be able to function for the day.
Two years later, I would have to give up driving as fibro was affecting my eyesight more and more. My life completely changed four years ago. I became what they call chronically ill, as the conversion disorder tripped me into a permanent fibro flare. Things that at one time had seemed so easy were now things I struggled to manage every day. I need a cane to keep my balance, and a walker now and again when I get really bad. A wheelchair is needed if I am traveling or doing something as simple as going to the mall.
So here we go, here is my list of the 10 things that surprised me because they either weren’t in the literature of the time, or they were considered to be rare symptoms of fibromyalgia. A couple of good things are mixed in as well – nothing can be all bad.
I did not know it was possible to be so tired – that even when you woke up in the morning you would be exhausted just going to the bathroom. I didn’t know trying to do my housework or even getting dressed would tire me out so badly that my legs would literally give out. How is it that you can be so tired, even breathing feels like a chore? Then when it’s time to sleep, you can’t. You might be able to for 45 minutes or so but then you have to get up and move around because the pain is so bad. Broken nights contribute heavily to the fatigue, but even on rare occasions when I do sleep through the night, I wake up exhausted. I would never have believed that taking a shower could become a major undertaking and that I would be so tired afterwards it could take up to two hours for me to be able to get up and function.
2. Fibro Fog
Although the things I read told me about fibro fog, it is not really understandable until you’re going through it. I didn’t know I would forget what I was speaking about in the middle of a sentence, that I would forget the name of my husband or child, that words which should come easily to me don’t and that stuttering would become a way of life as I struggle to find the words.
Of all the things associated with fibromyalgia, this is the one I find hardest to deal with. How embarrassing to forget your best friend’s name or where she lives or her phone number; how embarrassing to be talking to your husband of 26 years and not be able to recall his name; how devastating to be speaking to your child and not able to recall their name. On those days when it is really bad, it hurts me so much to know that at some point I will hurt somebody’s feelings by not being able to remember what they are called.
This one actually surprised me a lot. Who knew journaling every day would be able to give me a look back at how I have progressed over time? My tip to anyone who is struggling with chronic illness of any kind: keep a journal. It will give you the opportunity to remember the good days, the great days and the wonderful days.
It will give you the opportunity to look back on those very black days when depression and anxiety had you so down you actually believed it would be better if you weren’t here. It will make you remember the reasons it’s better you are here.
In my journal, I write down quotes I find inspiring, things I really want to remember and who I talked to each day. I write down project ideas, recipe ideas and think of ways to make my housekeeping easier (for heaven’s sake, it takes me 45 minutes just to make the bed). The journal is like my memory for those days when it isn’t very good.
This one I guess I should have expected – that one by one the friends would all drop away, that I would have to cancel on them at the last-minute or just flat-out say no. It seems so funny to me I have friends all over the world online that I speak to at least a couple of times a week but those who were closest to me are no longer there. I have made some very strong friendships online but all of my friends who live close by I never see any more.
5. The Itch
In all of the literature I read on fibromyalgia, they mentioned the possibility of being itchy, but that it was a mild symptom and not everyone has it. They lied. Sometimes the itching is so bad I literally cut myself with my nails from scratching. It does not matter how much cream I use or any of the other itching remedies everyone recommends – the itch is unrelenting. There is not a time when some part or other is not itching. I have learned to be careful with just how much I scratch.
I am surprised all the time by the bad manners of people and then I am pleasantly surprised at the kindness of others. The number of times I have been walking towards the door and instead of maybe helping me out by holding it for me, the person just lets it go even though they have seen me coming. On the other hand, there are wonderful people who not only see me coming that then hold the door for me or offer to help me in some way but say something to give me a laugh or to make me smile.
For instance, I was at the nail salon yesterday to get my pedicure (I can no longer reach my toes without losing my balance and getting dizzy, even when sitting down) and there was the most wonderful lady and her husband also having a pedicure. She was about to turn 80 and he was getting very close to 90. She literally had me in hysterics the whole time we were there. I once wrote a post about kindness and how it was becoming a lost virtue; I can tell you with absolute certainty that not all the kindness is gone.
The other thing about people is they all think they have the answer or the cure for my problem. The fact that I tell them their cures and suggestions are all things I’ve already tried doesn’t seem to faze them. They are convinced there must be something I can do that will stop the disease in its tracks, or they plain just don’t believe you could have something that can’t be fixed.
7. Body Temp
Reading up on fibromyalgia, I discovered I was going to have problems with my body temp; since I was already going through menopause, this was not good news. I had already gone through the night sweats and the hot flashes were still running me down, but then along comes fibromyalgia, and as it progressed, the temperature swings became worse. When I was cold, I was freezing and when I was hot, it was hard to breathe. I would be literally dripping from the ends of my hair during the hot flashes amplified by fibromyalgia; and three or four blankets plus a couple of sweaters could not get me warm, because being cold was also amplified by fibromyalgia. I am mostly past the hot flashes now. I only get them now and again. For me, it is mostly the cold that takes over and that I have to deal with, but every now and again I’ll be lying in bed and the furnace goes on and it’s not a night sweat and it’s not a hot flash – it feels entirely different. The heat is, at times, unbearable – almost like you are in one of those places with super high humidity and heat.
8. Trading Off
It has become a game of trade-off; if I do this today, how little am I going to get done tomorrow? Should I do the dusting knowing tomorrow the only thing I might be able to do is shower, or should I leave the dusting for today and hopefully be able to put a meal on the table and play with the dogs and who knows, maybe – just maybe – I might be able to do a load of laundry as well? See what I mean? The trade-off every day; what can I do today that won’t incapacitate me for tomorrow? It is a constant balancing act.
9. Online Friends
I think one of the biggest surprises for me was just how many people with chronic illness I would meet online. How meeting them made me feel not quite so alone. Talking to others and discovering how they spent their days and learning about the compromises they made helped me to figure out my own system for getting things done. I have talked to so many whose conditions are more severe than mine, and yet our spirits are still high and each and every one of us still hopes that in the end, the medical establishment will eventually find a way to help and maybe even cure us.
10. The Guilt
Nobody understands just how guilty you feel not being able to do the things you used to. For instance, it has become normal for my house to be a mess, as my bad days far outweigh my good days. I know my floor needs to be washed but if I do that then I am literally going to be laid up for two or three days to recover from it.
The same holds true if I attempt the dusting, the vacuuming, the bathrooms, the laundry, just about any household chore. I have a cleaning schedule I made up that allows for latitude and how much gets done in a day. Some days I have to stay almost motionless so I can make dinner that night.
As one might expect, the guilt of sitting down on my rear end all day and not getting done even a third or a quarter of what you had planned for that day is so weighty you feel like you have an elephant or gorilla sitting on your shoulder.
A good wife and Mum is supposed to keep the house clean (and yes, I know how old-fashioned that sounds but it was the way I was brought up), is supposed to cook meals every night, is supposed to be the one being leaned on when it is needed, not the other way around. Thank God for my husband – he is now and has always been the tower of strength I need when the guilt and pain overwhelm me, and he steps in and takes up whatever the challenge is. But, that also makes me feel guilty after he has worked all day and then has to come home sometimes to a wife who really cannot do anything some days.
Wrapping It Up…
If there was one thing I could say to people who do not have a chronic illness, it would be that this disease is real. We are not faking, we are not being lazy, we are not just trying to get out of working. We have real and, in some cases, horrible, horrible pain. You would be amazed how many people think and say that to our faces.
I would also like you to know I am not ignoring you when you tell me all I need is to get a little more exercise or get out of the house more or be more sociable. I am simply not willing to listen to people who have no idea what it’s like, and thus have no concept of how many times we have heard these same things over and over, even from family members at times.
I think it would surprise you to know just how much we force ourselves into appearing normal so people don’t know how much pain we are in. Many of us put a smile on every morning hoping we truly can hide just how badly we feel, but that smile is wiped from our faces the moment we step in our doors. We generally do not want your sympathy or your pity. We are warriors and we push ourselves every day to be the best wives, mothers, coworkers and friends we can be. We are stronger than you could possibly imagine because every day we have to struggle to get through the day knowing somebody somewhere thinks we are a fraud.
This post originally appeared on Barb’s Outlook.
Thinkstock photo via DragonImages.