Fibro Warrior of the Week (#58)
Location: Sowerby, Thirsk, North Yorkshire, UK
Mantra: Just keep swimming.
UK native and former world traveler/adventurer—seriously, she went cave diving with GREAT WHITE SHARKS!!!— Hannah Lazenby is our fifty-eighth Fibro Warrior of the Week. She’s a new mom with a new name for her awesome blog: Hannah Spannah Coco Banana (formerly the “Mummy of one dream come true. Fibromyalgia, a baby and a (not so) little lady!”) Hannah definitely has a lot of insight about dealing with Fibromyalgia. Read about them all plus all her adventures, including a “naked” hospital jaunt…
FD: : Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Hannah: I was born in Harrogate which is in North Yorkshire, UK. I was raised by my mum who was a district nurse, my father who was self-employed and my big sister of five years. As an adult, I moved to London and was lucky enough to work in both Egypt and Trinidad. I also traveled a lot with work and pleasure and feel very fortunate to have been to a Louisiana, Tennessee, Florida, New York, Toronto, the east coast of Australia, lots of Europe, Kenya, and my big tick list activities are cage diving with Great White Sharks and scuba diving with Manta Ray. I also used to horse ride, ski and attend the gym regularly. Travel was exciting, fun, amazing… but I always liked coming back home and I am incredibly lucky to have a very close family.
FD: When did you first suspect that something wasn’t right? What happened?
Hannah: It crept up on me in a blaze of glory! Those phrases don’t usually go together, but in this instance they do!
I’ve always had a “bad back”. It used to hurt; I’d go and see a chiropractor or take prescribed pain killers, but used to just get on with things. It never interfered with my lifework or stopped me from being able to do something.
Fast forward to April 2011, and I was happily married and pregnant—the beginning of the glory!— with my deeply desired first, and only, child. I was fit and healthy and was beginning to get the energy of the second trimester. I was four months pregnant and had spent the day with my husband and friends. When we got home that evening, I had a sudden and instantly weakening feeling, followed by pain. I managed to get semi-comfortable and managed to sleep for a few hours. When I woke to use the bathroom about 2 am, I realised that I was in excruciating pain from my knock to my foot on the left-hind side predominantly (this is the beginning of the blaze!)
Over the next few days, I was seen by different doctors and was eventually admitted to hospital so that they could check the baby and try and reduce my pain.
As I was pregnant, they couldn’t do much— they couldn’t give me anti-inflammatory meds or perform a scan or x-ray my back which seemed to be the root of all evil, so I was made as comfortable as possible with pain meds. I was discharged at twenty weeks, on crutches, but after finding out that I was having a boy!!!
For the rest of the pregnancy, I was treated as though I had Symphysis Pubis Disorder/Pelvic Girdle Pain, which are pregnancy conditions where in a nutshell, your pelvis relaxes just a bit too much and leaves you with terrible and sometimes disabling pelvic, hip and back pain. When things were bad, I was very dependant on both my husband and my family, but my husband was part of the family business and worked a lot.
A quick summary would be: agonising pregnancy, planned c-section birth to my little man (the glory!!), a huge post-partum haemorrhage on the ward, blood transfusions and not getting better to the extent that you should after the hormones of pregnancy dissipate and stop causing the pelvis to flop about in the wind.
I improved slightly, but when my son was four months old, a year after I first became unwell, we went abroad on holiday and I began to feel incredible fatigue after walking a relatively short distance. We would walk along the promenade and on our return, I would get slower and slower whilst trying to work out if there was anywhere for me to sit and was there a way back to the hotel without walking? I was desperate and thinking taxi, not buzz lighters, but wouldn’t brave saying no.
(Every time) I would get back to the hotel, exhausted and my temperature would suddenly rocket, to the point that I could barely get into our room before I was stripping my dress off and would take a cold shower for as long as possible. I must say that it wasn’t hot where we were—- too cold to sunbathe, but you could wear a dress and light cardigan. Anyway, I’d then sleep for hours, waking only to feed my son, eat and then back to sleep. Over the fortnight, this happened about four times and then we gave up and stayed at the hotel.
I had also began to ache. I felt a bit flu like, but had no other symptoms. I was exhausted and didn’t feel right and it was more than being a new mum with a little baby.
FD: When were you diagnosed with Fibromyalgia?
Hannah: I think it took about a year or various tests, physio, iron tablets, a week on the rheumatology ward, an MRI, a Nuclear Scan, blood tests, pain killers, anti-inflammatory medication, rest, trying to keep going and getting very, very poorly.
It was a very long and hard process which was further delayed by the diagnosis of severe postnatal depression. My husband then left shortly after, when my baby was seven months and I doggedly kept on going for six more months through a hard winter with a solid fuel stove, a divorce, pain, money worries and my baby before I just stopped working. My batteries went, my computer was overloaded and that was that. My mum and dad moved in, and my sister and her husband gave every minute of spare time to us. Don’t get me wrong, they had been helping—incredibly so— since my pregnancy, but at this point they had to take over and nurse me and care for my child. This was in February 2013 and I was diagnosed with Fibromyalgia and Hypermobility in approximately July 2013.
FD: When you received your diagnosis, how did it affect you?
Hannah: I was devastated. Absolutely devastated. The condition had been whispered and I had read about it whilst late night Googling, to satisfy my insomnia, and it was the last thing I wanted to be told that I had. I felt like I was not being taken seriously. They weren’t listening to how much pain I was in. I wasn’t a bonafide “ill” person, and I was no longer a proper patient. I felt paranoid that people were thinking, “Oh, here she is again, there’s nothing wrong with her” and although this isn’t true, I was told by one professional that depression can change your perception of pain. That sent me reeling. Was this really all in my head? Was I causing this? Doing this to myself? I hated myself, got scared that my family would think this, began to apologise fervently, tried to make myself better with grit and determination, but nothing worked. The pain was insane and the fatigue knocked me to the floor.
Obviously, over time, my thoughts have changed or have been changed for me and I don’t blame myself so much, but it’s very hard to see everyone giving up their time, energy and lifestyles to care for you and your son because of your illness.
FD: Since then, how has your outlook on life changed?
Hannah: I notice people on crutches, everywhere! I know so many friends who have friends that have Fibromyalgia. It’s everywhere. In all ages, lifestyles and types of people.
I struggle to come to terms with it, still to this day. If I had to have something, why couldn’t I have something that was treatable? Why me? Why does my son have to have a mum like this?
I treasure every minute of my son’s life. We still co-sleep—- in my bad times, it’s the only time that I can really be for him and we don’t have to rely on anyone else. My life is all about him.
He gets all my energy. I am taken away so often for various doctors meetings and so whilst he is young (he’s 2.5 now) and he still wants me all the time, I am his. I wake with him and I go to sleep with him. I don’t watch TV or go out (I’ve been out twice!) as I can’t waste that energy or risk making the pain even worse and not be there for him the next day.
I know I have to do things for me and I do snatch moments every now and then… I’ll hopefully get there, but for now, this is all I’ve ever wanted to be… Mummy.
FD: How does Fibro affect your day-to-day life?
Hannah: Pain. Fatigue. Pain. Fatigue. Pai……
I think I’ve already answered this above. I try to stay positive, but it’s really hard. I want to be like the other mums, I want to walk to places instead of driving, I want to be spontaneous and not plan every moment and trip to make sure that I’ll be able to rest. I want to run with my baby and play football. Carry him and put him on my back. I want to be independent and not rely on my family. I don’t want to be afraid, or hate myself or feel like a failure.
I don’t know my life as a mother without Fibromyalgia so it’s hard to answer as my life changed completely in that slow, creeping blaze of glory. I guess that if I didn’t have Fibromyalgia, I’d maybe not want so much.
FD: What can’t you do anymore because of Fibro?
Hannah: All of the things that I used to do!!
I do walk with my crutches. We do go to the park, but I drive there. I do try to have the occasional night or day when it’s just my son and I, but I’m constantly getting side effects from medication, changes to my meds, illnesses, new diagnoses (I have just been diagnosed this month with Seronegative Inflammatory Arthritis as well and have started new treatment, but it’s too soon to tell what effect it may have.)
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Hannah: I have started to write a blog which I find really helpful. It’s almost like therapy and I’d like to think that maybe I might be able to help someone who has Fibro or help a loved one understand Fibro.
FD: What has been your experience with seeking medical treatment for Fibro?
Hannah: I have been very fortunate. In the UK, unless you get private healthcare at work or are very rich, you don’t tend to pay for private insurance as you already pay a percentage of your wage to the government for National Insurance so we choose the surgery, but not our general Doctor or GP (General practitioner). They are the first port of call for anything from a painful foot and birth control to infections and rashes with everything in-between. They will consult, perform tests and refer you to a specialist if they think it’s required. My GP is fantastic, in fact, the three main GPs that I see due to job sharing and holidays, etc., have been fantastic. She tried pain killers and advice, the mechanical route and then rheumatology. I have seen lots of specialists and recently, have even more reason to be thankful.
My rheumatologist was just about to discharge me with Fibromyalgia and Hypermobility, meaning back to GP care which would have made it hard to see a rheumatologist again without paying privately (approx.. £300/£400 for a private consultation. He told me that he wanted me to see his colleague as a second opinion and it was in this consultation that arthritis was noticed using ultrasound.)
In the whole, I’ve been treated with empathy and respect.
FD: How has Fibro affected your relationships, friends, family, partners?
Hannah: Hmmmmn. My husband left and so that one’s done and dusted! Ha ha ha! There’s obviously more to it than that, but it put the biggest strain on our relationship. When you’re ill, you quickly find out who your friends are. Best friends become strangers and acquaintances become close.
It has, at times, put a strain on my relationships with my mum, dad and sister, but you can’t expect anything less when you are almost going through the grieving process and range of emotions whilst losing your independence and becoming reliant on them. I’m fortunate that they are still here and have stuck with me.
FD: What is the biggest challenge you face living with Fibro?
Hannah: For me, its watching my son and not always being able to join in or meet his needs.
FD: What inspires you to keep on fighting?
Hannah: My son and the hope that one day I will start to feel better. I have started to juice when I’m well enough, in a bid to fill my body with nutrients and when my pain killers allow, I try to be active and gain strength. I am inspired by people that manage this condition with exercise.
FD: What advice do you have for other people who are living with Fibro?
Hannah: Just keep swimming. Rest when you need to and really think about your emotions. Recognise when you’re not doing something because of fear or because of pain. I know that many a time I have not done things and have been told not to do things because I might be worse the next day, and have feared pain and any appointment or arrangement that meant I had to get up and going because the clock was ready, not me.
Slowly and with pain relief, I have become more mobile (albeit on crutches) and when I feel good, I make the most of it; I don’t fear enjoying it because of tomorrow.
ACCEPT HELP!!!! Seriously, if they’re offering, they want to. They don’t feel sorry for you or guilty, they love you and want to make your life easier. (Someone repeat this to me, will you?!?)
Try not to hate yourself or blame yourself. It’s not your fault. You didn’t ask for this or deserve it.
Ask for help.
FD: Sometimes humor provides relief when dealing with chronic illness. Do you have a funny Fibro story you can share?
Hannah: I’m afraid not. Fibromyalgia, surprisingly, has not led to an abundance of comical situations. I did almost pass out in the hydrotherapy pool and needed to be spinal boarded out and then wheeled through the hospital soaking wet, under a sheet, past the coffee shop, etc. You don’t imagine that a hospital has a swimming pool so I did get some funny looks……a handsome male nurse was trying to help my mum undress and dress me, but that was just mortifying…
Follow Hannah on Twitter @HannahLazenby
Read Hannah’s blog: Hannah Spannah Coco Banana
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