This week we are getting to know Hollie of Brighton (East Sussex), England. She was formally diagnosed with Fibromyalgia in December 2013, a week before her 21st Birthday! She also has Multiple Sclerosis. She loves animals and was once training to be a Veterinary Nurse but is now volunteering with a wildlife charity, hand-rearing baby orphaned birds twice a week.
It might seem that everyone is ahead of you, but life isn’t a race. Share on XGive us some basics… Are you married? Kids? Pets? Work? What do you enjoy?
I live with my dad, who is also my carer, and our menagerie of rescued pets. We have 10 cats, 3 dogs, and several small furries, including 2 rats, a guinea pig, a rabbit, and birds. I began to train as a Veterinary Nurse, however since becoming ill, I have had to re-evaluate my career plan, and have now began volunteering at a local wildlife centre where I hand-rear orphaned animals twice a week. I love nothing more than spending time out with my dogs, looking after our menagerie, and watching movies and boxsets. I’m slowly preparing to take my driving test in the near future.
What lead up to your diagnosis (symptoms, dr visits, etc)?
I began to suffer with my health in 2010, at the age of 18. It started with needing to take a nap in the afternoon, feeling fatigued and like I had ran a marathon when I had only just walked up a flight of stairs! As time passed, my symptoms began to get worse. I began to suffer with blackouts and seizures, and spent more time in bed and absent from college. I began spending more time at my doctor’s surgery and the hospital than I did at home. In October 2012 I woke up one morning without any vision whatsoever, I was completely blind! After being rushed to hospital the consultant I saw began to suspect I had Multiple Sclerosis. I was referred for CT scans, MRI scans, blood tests, and antibody tests. After many more referrals, appointments and tests, I found a new GP, who recognized the signs immediately and knew who to refer me to. I was finally diagnosed in December 2013, by my lovely rheumatologist whom I’d been referred to by said GP.
What was your life like when you were diagnosed?
To be completely honest it was like a breath of fresh air. I finally knew what was wrong with me, that I wasn’t going crazy and I was finally getting the help I needed. At the time I had just finished an animal management course and I had decided to put off going onto another course until I could safely say I could put my all into it so I was beginning to feel quite isolated and a bit of a waste of space.
I almost forgot to add in about my poor memory (how ironic) and how it affects me. It means I can’t be trusted to cook, run a bath or do anything that could potentially do me harm if I happened to forget! It also means I rely on my dad to help remind me to take medication, book and take me to appointments and generally look after myself in that sense. In addition to that I also have a very low immune system and constantly get infections, viruses and colds!
How did your family initially handle your illness?
My family has always been extremely supportive. I lost my mother just as my illness began to take hold of me but before then she was always there for me and supported me through everything. My dad began to take over from my mum in turns of caring for me as my illness began to worsen and he has been a godsend. My siblings are the same; when I need them they are always there and always have been.
What do you feel is the most challenging aspect of Fibro?
I feel like the most challenging part is the fact no one can see it. Since developing Fibro I find my legs are very unpredictable, as is my back, so I regularly walk with a cane when I leave the house and often have to use the bus even if it’s just a few stops. I have received frequent comments about “being young I should be able to walk and should stop being so lazy” or “I should be giving up my seat for people that actually deserve it”. Its very difficult for people to understand that some days you can feel okay to walk without a stick while others you need it.
Do you have any other co-existing conditions? If so, what are they and how do they impact your fibromyalgia?
As well as fibro I also suffer from Arthritis and Multiple Sclerosis. Both impact my fibro in different ways. I find that when my MS flares, it causes my fibro to flare just as severely, especially my IBS and my stability. When my Arthritis affects my joints and makes them stiff or sore I often find my muscles become incredibly sore and painful as they are over-compensating for the joints being as agile as they should be.
What (if anything) have you found/ done that has improved your symptoms?
I feel like I’m still very new to fibromyalgia, despite having it for quite a while. I’m still learning what works for me and what doesn’t in terms of medications.
Other than that, I have researched and started a low carbohydrate, moderate protein and high fat diet which has actually helped me a lot more than I originally gave the diet credit for.
How open are you with friends & family about your illness & symptoms?
I’m very open. I often make it public because I believe sometimes the best way of educating people about the illness is letting them see it and how it affects me for themselves. It’s hard for people to understand how horrid you feel if you hide it from them, but I make a point of also showing I can carry on through it when I need to.
I believe the best way of educating people about illness is to let them see it. Share on X
What is the best advice you’ve received about fibromyalgia?
Listen to your body. If you feel like you are unable to take part in an activity it’s probably a good idea that you don’t. Ignoring it and carrying on will mean you overstep your mark and that can make you feel 10 times worse than you might already.
What was the worst advice that you followed?
“Just ignore it and do it anyway, you’ll feel better when you get used to it”. I find that it’s always the people who don’t understand that have the most to say about how you should go about doing things.
What is your favorite way to cope with your life as a #spoonie?
Hot water bottles. Lots of hot water bottles! Having a pet with you always helps you cope. I always have at least 2 cats and a dog piling into bed with me which is the nicest feeling imaginable, especially when you’re feeling down or alone. Our youngest dog Ember, who is a Saluki has been unbelievable in helping me cop e with my illnesses. From the day she came home she had the ability to sense when something was wrong, she can also predict my seizures! Shes just turned 2 and has just started to understand the command “Go and get Dad! Once shes finished her basic obedience training we’re hoping to register her on a course to become my service dog! I also find watching silly, comical movies helps. As they always say, laughter really is the best medicine sometimes.
What is it that inspires you to keep going, despite your illness?
My dad, without a doubt. He’s always been such a strong person and my rock. When I’m feeling my worst he’s always there to make me laugh or keep me sane. He does everything he can for me and never complains or makes me feel bad that I can’t do something. If anything, he knows before I do when I’m struggling. He’s one of the people that I genuinely do not know what I would do without or if I would even cope without.
What is one thing you’ve learned about yourself since your diagnosis?
I’m stronger than I give myself credit for and I’m more determined (Or stubborn!) than I thought I was. I’ve learnt to be kinder to myself and give myself a rest when I know I need it.
What is the most important piece of advice you would give to someone newly diagnosed with fibro (or even still seeking a diagnosis)?
Take care of yourself and don’t beat yourself up too much. Everyone around you might seem like they’re ahead of you but life isn’t a race, and everyone is different. Don’t be scared to ask for help when you need it, asking for help isn’t a weakness it’s strength. Keep your friends and family close, you’re going to need them, and the friends that you may lose or drift from isn’t a reflection on you. Like all parts of life, you’re going to make new friends that will fit in more with your new chapter. And lastly, join a support group. I’ve found many on Facebook where I feel I have made some close friends and have such a good support network. It might not seem it, but having people who are in the same boat as you can be just as helpful as close friends and family are.
Be sure to follow Hollie on Twitter
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- Fibro Warrior Interview with Suzanne of FibroMomBlog
- Fibro Warrior Interview with Cindy C
- Ann Smith: A Fibro Warrior Update!
- Fibro Warrior Interview: Ali Hemsley
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