This week I’m interviewing Fibro Warrior Ali Wade from Pembrokeshire, Wales, UK. She has been married to Rich for nearly 10 years and has two grown step-kids, and one granddaughter, with another due in April. She enjoys looking after her animals (two ponies, a donkey, two dogs, and four cats), a variety of crafts (paper-crafting, sewing, needle-felting, & digital art), blogging, social media, traveling, cycling, reading and watching tv. She was diagnosed with Fibromyalgia by a Rheumatologist in 2010 (at the age of 39), but she and her GP were sure she had it long before.
What lead up to your diagnosis (symptoms, dr visits, etc)?
Looking back I have had Fibro since childhood, but it was in 2005 when I was forced to give up my physically active job due to severe fatigue and pain that started the road to diagnosis. I was originally diagnosed with osteoarthritis in my lower spine; however, another hospital has since said that I have no arthritis! Symptoms continued to worsen and my sister (who works in the medical industry) suggested that I may have Fibro. I had not heard of it before, but read the information she sent me and was shocked to see that I had ALL of the symptoms listed. I researched more and went to see my GP at the time. He declared that he did not believe in Fibro and did not want to give my symptoms a name. I found a new GP who has been fantastic, very supportive and does not just hand out more tablets (he has suggested diet changes and meditation etc). He referred me to a rheumatologist, who actually also diagnosed Hyper Mobility Syndrome as soon as I walked into the room!
What was your life like?
We got married in 2005 when the symptoms were really starting to worsen (bless him – it didn’t put him off!). His kids were 12 and 14, and staying with us regularly. I had to give up my well-paid full-time job and suddenly was at home all the time and taking a lot of painkillers.
How did your family initially handle your illness?
They were all very supportive and caring. However, none of us really understood how Fibro would affect us all.
What do you feel is the most challenging aspect of Fibro?
Good question! I think it is the uncertainty of how I will be from hour to hour, and the impact Fibro has on my ability to travel, attend events, etc.
Do you have any other co-existing conditions?
I also have Hyper Mobility Syndrome, Psoriasis and Hip Bursitis. The Bursitis, in particular, is often the main thing that restricts my lifestyle (I cannot ride my pony much now or drive a vehicle very far). The stress of Fibro means that my Psoriasis can flare up and both conditions cause me to have itchy skin.
What (if anything) have you found/ done that has improved your symptoms?
I take medication when needed – Solpadol (codeine/paracetamol) for pain, Buscopan for IBS, Ibuprofen for high temperature/inflammation levels, allergy tablet if I start to react to something in the environment (eg. smoking, certain perfumes, tree pollen). Through pacing myself, ensuring that I get a reasonable amount of sleep, avoiding foods that flare up my IBS and making my life simpler I have reduced the number of tablets I take each day (in the summer I can even go all day with no tablets at all). I find that being outside always makes me feel better, as does keeping myself occupied with things like crafting/social media/reading etc.
Recent update – my hubby bought me a Garmin VivoFit wristband for Xmas. This tracks my activity through the day (number of steps, miles covered and calories used – and heart rate when I wear my heart rate band) and also sleep levels. I use it to keep my activity levels DOWN and make sure that I rest after any particularly active part of my day, and it is very interesting to see how disturbed my sleep is; I’m already seeing a pattern of disturbed sleep after a very busy day).
How open are you with friends & family about your illness & symptoms?
I generally do not talk about it a great deal now, as it is ‘old news’! If someone asks and I have a particularly troublesome symptom/flare at the time, then I will let them know how I am feeling, particularly if it is causing me to miss an event.
Do you blog about your illness? If so, what inspired you to do so?
I have mentioned my health on my blog, “Me and My Life”, as it is a huge part of my daily life – and recently I did a separate blog post (published on 8th December ). I will certainly be blogging more about Fibromyalgia in the future.
What is the best advice you’ve received about Fibromyalgia?
Pace yourself and learn to say no.
What was the worst advice that you followed?
I spent money on a box of powders/tablets from the US (including having to pay customs charges) that had supposedly helped a lot of people with Fibro. It just made me ill. I also tried Guaifenesin, which again made me feel terrible for over a week.
What are your favorite ways to cope with your life as a spoonie?
Time at home by myself. Caring for my animals. Hopefully some warm sunshine and walking the dogs in a field. A bit of pampering – hot tub, shower and painting my nails. Light/fresh food. Crafting. Good tv and/or a book on my Kindle app.
What is it that inspires you to keep going, despite your illness?
My husband, my animals, the beauty of the natural world surrounding us (Pembrokeshire has stunning coastline, mountains, and valleys), my constant desire to learn/explore, and my hope that one day a cure/treatment will be found.
What is one thing you’ve learned about yourself since your diagnosis?
I knew that I was strong, as I have had illness since early childhood (Psoriasis started when I was 3), but now I know that despite regular moments of depression/anxiety I can cope with everything thrown at me.
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Find a good doctor who doesn’t just hand out tablets, pace yourself and make your life simpler.
Is there anything else you’d like the readers to know?
This year I am starting to craft items (and also create digital designs/artwork) to raise funds for Fibromyalgia Awareness UK. You can visit my blog to find more details about that, and contact me.
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