Parenting a Disabled Child When You Have Fibromyalgia

Written by: Sheri Peterson

Parenting is hard. Living with four chronic illnesses is really hard. Having two kids, one with a profound disability, and being sick yourself is really difficult sometimes, to say the least.

I have two boys ages 15 and 12. My oldest son has spastic quadriplegia cerebral palsy. His muscles are really tight and stiff and he has very low muscle tone in most of his body, so he uses a power wheelchair to get around. He has a lot of trouble with his fine motor skills, so because of that I have to help him with many tasks.

Every morning I have to change his diaper, dress him, put his shoes on, strap his feet to the footplates on his chair, comb his hair, brush his teeth, give him his meds, get his coat on, all before the bus arrives to take him to school. Thank goodness my youngest is old enough now to not need much help getting ready for school in the mornings. I won’t bore you with all the details of my day, so I’ll just give you the gist. After the boys get home from school it is a lot of up and down for me because my son wants and needs lots of things. If he needs a drink I have to get it for him. If he wants a snack (which he does every day after school) then I have to get it unless his brother decides to be nice and do it. Then, of course, there are all the things most parents do, like cook supper, eat, help the kids with their homework and the whole bedtime routine.

I’m sure most of you reading this are things “Well, ok so what’s the big deal” “That’s not a lot to do!” Well for a healthy person it isn’t, but when you have four chronic pain conditions, it is. It’s not only physically demanding on my body but emotionally demanding, too. When you’re in so much pain and so physically drained all the time, it is a real struggle.

In 2014 I was diagnosed with chronic widespread myofascial pain, Fibromyalgia, and CFS (chronic fatigue syndrome). Then, in 2015, osteoarthritis in my lower back, spine, and hips. So yeah, apparently someone up above thinks I am a total badass and being a mother of a child with a disability just wasn’t enough, I had to get sick, too. And, I couldn’t just get one chronic pain disease, I had to get four!

Most of the time I handle everything pretty well, but I am having more and more really bad pain days and it seems to be getting harder. Some days are better than others. As most who live with one or more of these conditions know I am in pain 24/7 and my muscles constantly ache and throb. The pain is from the base of my skull, my neck, my shoulders, the tops of my arms, my back, hips, and within the last few months all of my legs. It used to be just the tops of my legs but now the pain is everywhere. Some days my legs hurt so bad and are so stiff that I can barely walk. That part really scares the hell out of me. Some days even my bones in my spine, back, and legs hurt.

The best way I can describe it is that on a good day I feel like I have been beaten half to death with a baseball bat in every single area of my body. On a really bad day, if feels as though I’ve been beaten with a sledge-hammer. And then there’s the fatigue. The fatigue is always there no matter how much I sleep. And sleep is another issue.

Many nights I can’t sleep at all either because my brain refuses to shut off or because I’m in too much pain to get comfortable enough to sleep. Then the brain fog follows. The brain fog is usually bad. Very bad. It is hard to think, it’s hard to concentrate, and it is hard to remember things. Anymore, I must have my boyfriend go with me to the store to help me remember things and think of things we need. If I make a list, there is a good chance I will leave it at home or leave many things off the list because I just forgot to write them down or I didn’t know we were out of something.

Luckily, my boyfriend also helps me a lot with lifting my son, so that I can change his diaper and dress him. Oh, did I mention that my son weighs 190 lbs and is about 5’4″? No? Well, he does/is and I have to lift him in and out of his chair a few times a day.

There are many, many days when I wish I could just lie in bed and try to let my body recover, even a little bit, but when you have young kids, you just can’t do that. When you have a teenager with a severe physical disability, you can’t do that. My oldest needs a lot from me. My youngest does, too, but not to the extent that my oldest does. Dressing and changing him are huge challenge for me because of all the lifting, tugging, rolling, and pulling I do just to get those tasks done. It is extremely hard on my body.

There are so many days when I wish I could just shut the world out and not participate in life, but I don’t get to do that. My kids need me. I’m glad that they need me because on the particularly bad days when I feel like I just want to give up, I know that I can’t because my boys need me and want me. I won’t pretend that this isn’t frustrating, because it is. I can’t put myself first all time and do what I need to do to feel better. When my son needs changed or wants something to eat, I can’t tell him “Not right now, I’m hurting too much” or “get it yourself”. It doesn’t work that way for me. I really wish it did.

Most days I can’t even make it through the day without a nap because the fatigue and exhaustion take hold and basically I crash. If I don’t get enough sleep it also throws my body into a Fibro flare. Flares are the worst and really hard to cope with. When I’m in a flare I don’t have anyone I can count on to do everything for me while I lay in bed and recover. In a perfect world I would. So I have to listen to my body, my body doesn’t give me a choice. That’s really hard to do sometimes, to balance what my body needs me to do and do all of the things my son needs from me. I do the best I can as a parent, just like most parents do, and I hope that my chronic illnesses don’t screw them up too much.

I’m definitely not the parent I want to be and I struggle with that all the time. I just do what my body allows me to do and I have to say “No” to them a lot. They are learning that when I say I can’t take them to a friend’s house (this is more my youngest) or I can’t drive 15 miles to the next town to get an Xbox game or movie, or I can’t take them out to eat all the time, then I can’t. I just physically can’t.

Since they were older when I got diagnosed (although I had symptoms long before I was diagnosed) it has been a little hard for them to understand because I haven’t always been sick. My youngest has had to learn to be more independent and do more for himself. Which isn’t always a bad thing but it’s difficult sometimes when he sees me do almost everything for his brother. It is definitely a balancing act, and one I don’t always balance so well, but I try.

If any good can come out of my chronic illnesses, I hope it teaches my boys patience, respect for others, resilience, and compassion. For the most part, I think they are learning these things. My youngest will often ask me if he can do anything for me, or get me something like a hot cup of tea or some juice, especially on the bad days, when he knows I’m really hurting. My oldest son will ask me at least 3 times a day if I’m ok. Of course I smile and say I’m fine and I try to hide the pain, but he knows. I don’t hide things too well. I have never been good at that, but I don’t want them to worry about me, so I try to hide it the best I can. This warms my heart when they ask these things because I know they care and love me and want to help me feel better. I love it when I get unexpected hugs, and when they tell me they love me.

Most of all, I just want my boys to know that I love them with all of my heart and I wish so much that I wasn’t sick so I could be the mom that they deserve. I could do more things with them, if my body allowed me to. I just hope one day they understand, that even though mom is sick and her body is riddled with pain and relentless fatigue every day, that I tried. I did the best I could and that they are the reason I get out of bed every single day and battle this body of mine. They are my heart, my love, and last,   but certainly not least, my saving grace and I honestly don’t know what I’d do without them.

My name is Sheri Peterson. I am a single mother of 2 boys. They are 15 and 12 years old. My oldest son was born 13 weeks early and weighed 1 lb 15 oz at birth. He has spastic quadripledgia cerebal palsy and is in a wheelchair full-time. My youngest son was thankfully born healthy and happy.

I really believe that having gallbladder surgery and getting the flu 3 years in a row kick started the CFS and Fibro. I just try to get through each day as best I can and be the best mom I can be for my boys.

I’m still learning how to be sick and be a good mom at the same time. Thanks so much for reading my story!

Read Sheri’s Fibro Warrior interview.