Q&A: A Day in the Life with Chronic Illness and Pain by a Fibromyalgia Spoonie

I’m writing this post as part of an evergreen linkup party by Sheryl of A Chronic Voice. I thought it was such a great way to try and articulate what daily life with fibro can be like.

In brief, illnesses and/or disabilities I have.

Fibromyalgia, anxiety, depression, migraine and a spinal injury.

Where do you come from? How accessible is your city/town?

A small village in north west England. There’s no public transport here, you’d have to walk more than a mile to catch a bus, along country lanes with no pavements/sidewalks. There are lots of gates and stiles in the surrounding farmland, so not very accessible at all if you want to go for a walk in nature.

My first thought and/or sensation when I become conscious in the morning.

Usually something along the lines of…’my back/leg/hip/neck is sore’ and ‘well, that was another terrible night’s sleep’.

How long it takes for me to go from zero to functioning, if at all.

Usually about 45 minutes once I’ve had my first coffee in bed. When I experience migraine or severe pain, I never reach the functioning stage at all and am bedridden and unable to do anything until it passes.

What my morning routine is like in general.

Living with a condition like fibromyalgia, it can be quite hard to have a typical day because the condition varies in its severity and most prominent symptoms on a daily basis. Sometimes, the pain and / or fatigue can be so severe that it’s almost impossible to do much of anything at all. However, I would usually have coffee in bed, then get up, washed and dressed before heading downstairs for medications and breakfast.

Before eating, I try to do some gentle stretching to help alleviate any morning aches and pains. Then it’s time for breakfast, after which I usually experience a sharp rise in fatigue, so I will then rest (take a nap, read or meditate). After that, pain levels permitting, it’s time to take my dogs out for a walk. I find that being outdoors in nature always helps my worried mind and a gentle walk seems to loosen my body as well.

Best and worst times of the day in terms of pain, fatigue, etc.

For pain, it is normally first thing in the morning after waking up and I experience a spike late afternoon too although this depends on what activities I have been doing that day.

Fatigue is worse after breakfast and again in the afternoons. I try to avoid driving anywhere at these times as it isn’t safe for me to be on the roads when the fatigue strikes.

What I consider a daily self-care must do.

No matter how bad I feel, I always try to complete basic personal hygiene – wash, brush teeth etc.

The household chore I have the most trouble with.

Probably vacuuming. It’s not so much the vacuuming itself, more moving the vacuum cleaner around the house, as it takes a lot of effort even with a lightweight model.

A task I wish I had more help with.

Definitely cooking. Whilst I do love to cook, it can sometimes be too much for me depending on what else I have done in the day. A personal chef would be my ultimate luxury!!

The part of the day I like best.

Mornings when my husband brings me coffee in bed and I spend time cuddling my dogs and reading – a blissful start to the day 🙂

What’s breakfast, lunch and dinner typically like. Any diet protocols?

Breakfast – porridge or overnight oats with berries and banana

Lunch – soup and a sandwich

Dinner – varies hugely depending on how much energy I have. We have a lot of pasta and stir fries.

Are you are able to do any exercise? If so, what do you enjoy and does it help with managing your pain?

Yes I love swimming, especially the feeling of weightlessness whilst in the water, plus it helps my pain better than any medication I have ever tried. I also enjoy walking and gentle yoga.

Things that help me de-stress in my every day life.

My husband, my dogs, meditation and writing.

If working, how do I keep sane with the work stress? If staying at home, how do I keep sane with the isolation?

I don’t work currently because the illnesses forced me to stop several years ago. Despite being at home, I never feel isolated, I enjoy solitude and my own company.

Do you have any pets and how are they are a part of your life?

Yes I have two dogs and I really don’t know what I would do without them. Before I got my first dog, I was beginning to struggle to walk, which was one of the main reason to get her in the first place. It turned out to be one of the best decisions I ever made. My ability to walk has improved hugely and my heart is full of love for my doggies too!

People I see most often and my favourite activities to do with them.

I don’t really see many people just my husband and a couple of friends who I go dog walking with.

If I could leap out of bed pain free for ONE day within my current environment and circumstances, I would…

Drive to the seaside and spend the day walking with my dogs along a quiet beach.

Is there anything else you’d like to share about daily living with chronic illness/disability?

Some days, just getting out of bed, washed and dressed is all I can manage to do, and even that feels like an achievement. I would love non-spoonies to understand what we are battling on a daily basis.