Here is the first (and possibly the only) fibromyalgia awareness interview. It’s pretty long but that’s because Lottie has given an incredibly raw and honest picture of her life. I thought about editing it down but I didn’t want to detract anything from the picture Lottie paints of her life. She’s willing to share some intimate and private details so that people can know what the reality of living with fibromyalgia is. This interview will make you laugh, cry, but mostly you will realize what an incredible woman she is. She is a hero in hiding, and provides so much inspiration for me. Read the whole thing, you will be so glad you did. You can read her blog The Invisible Illness-living with fibromyalgia and follow her on Twitter (@GeorgieLotte).
*For the purpose of the interview Fibromyalgia will be shortened to FMS or Fibro and diagnosis to Dx*
Name and age: Charlotte Clare Armstrong, 38 yrs old
When did you first experience fibro symptoms?
The first FMS symptoms were on the 20th January 2001
How long did it take to get diagnosed?
It took me 3 years to get a proper Dx
What are your main symptoms?
I suffer with Chronic FMS it affects me from my face down to my toes.
- I have widespread pain mainly in my shoulders, back, hips, knees, elbows, hands & left side of face.
- It can also be very painful if someone even as much strokes my skin it actually hurts, even wearing clothes is a pain in the ass. I tend to spend most of the day wearing panties (knickers) and a 100% cotton T-Shirt with a pair of flip flops to keep the soles of my feet clean.
- Major sensitivity to cold water & cold weather
- I have hot & cold flushes
- Light Sensitivity
- Headaches & migraines
- Muscular fatigue
- Sleep deprivation
- Lack of quality deep sleep- ‘I don’t go into stage 3 REM sleep hardly ever’ so no restorative sleep.
- Muscle spasms
- Shaking & Jerking of body all over, like twitching
- Loss of appetite
- Bladder control problems (I can’t always control when I am going to pee), the doctor said it’s called an over active bladder caused by the Fibro and worsened by the Hysterectomy that I had 2.5yrs ago.
- Complete loss of sex drive (nearly)- it’s very flat put it that way. We now have enough sex that my husband doesn’t feel neglected and I am not in agony for days on end afterwards.
- I had to have a hysterectomy as my womb would go into spasms and they were the most painful thing I have ever experienced in my life. Sex would leave me in agony for up to a week while my womb went into spasm (no wonder we hardly EVER had sex when I had a womb) also the release of hormones before my period would mean that I would sleep for between 4 and 10 days as I was completely wiped out and found it impossible to wake up – I had enough energy to eat and drink but that was it. The hormones also intensified my symptoms, the pain was beyond PAINFUL. Depression, anxiety, nausea, vomiting, IBS- all of it was made worse in the 10 days leading up to my menstrual cycle beginning.
- Pins, needles & numbness this happens a lot to me, especially my hands, feet & limbs. The numbness is the worst for me, especially if it happens in my hands or legs.
Do you suffer with any other related or non-related illnesses?
I suffer with Irritable Bowel Syndrome.
Puritus- ‘Itching Skin All Over’
Chronic Fatigue Syndrome (CFS)
How much do you feel your illness impacts on your life both in terms of day-to-day necessities (washing, cooking, etc)?
I can’t help with any housework at all, I may sort the washing so that the colours don’t get mixed up and I can sit and fold clean washing into piles for each person to take to their room and I will give direction when cooking but the main responsibilities lie with my husband and 2 older children who are now 16 and 17. It’s hard as I cannot prepare food at all unless it’s pre-cooked and in a container with a plastic film lid where I can just eat it. We had to buy a new kettle that I didn’t have to lift up it dispenses one hot cup of water at a time from a jet like a coffee maker.
Hmmm bath time is a pain in the arse, I can’t wash myself properly as my arms won’t bend and I have had a few bad falls getting in and out of the bath. I have been denied a shower as I didn’t want a walk in one.
As I have had FMS for nearly 11yrs now I have learned what kind of clothes are easy for me to wear and what kind of shoes I can put on and off, I really struggle with bras though. Other than that I am pretty self-sufficient with learning- over the years I learnt what is best for me to wear. I made it a fun thing for me to do rather than looked at it as a struggle. I make most things fun for me to do, it’s like re learning again. I’ve accepted my disability and what it has done to my body, so instead of focusing on what I can’t do I focus on what I can do instead and I celebrate each thing that I can do.
And on a bigger scale, how has you illness affected your life choices, for example career, child-care, friendships?
I had to totally retrain as I was unable to continue with the job that I did. I am now a qualified Person Centered Counsellor and volunteer at a clinic for women with alcohol problems. I can’t work full time ever again though, I would be way too unreliable (something that does sadden me at times), but I see that the work I do is positive and has a major impact on the women that I work with, so instead of focusing on what I can’t do I focus on how much the work I can do helps.
Family relationships – really I am only close to my children, hubby and parents. My mom is an FMS sufferer so she and my dad really understand. My two eldest children were 6 and 7 when I got the FMS, as it was caused by the trauma of having an emergency C-Section with my youngest child who was 8 weeks premature. The physical trauma and the intense worry that my child may die (I had lost my first baby at 26wks I was terrified of going through burying a child again and this was my hubby’s first experience of raising his own child) meant I had many worries to contend with. I was advised not to have any more children after my 3rd pregnancy due to my body not coping well during pregnancy, going against the docs advice to have a child with my hubby put my body under too much strain- I nearly miscarried the baby twice before he was finally born at 32 weeks. He is now a gorgeous healthy 10yr old whom I have never regretted having nor blamed for the way that I am.
My marriage– The illness did and does put my marriage under extreme pressure at times, at first it was because my hubby didn’t understand. Now it can be because, with the drugs and the pain, I won’t want sex for 4mths at a time. I wish it was different and have been to the doctors to ask for Viagra or Testosterone and been refused. I have at times thrown it back at my hubby that I am ill because I gave him a child because I had told him before my pregnancy that the doctors had advised me not to have another, but he wanted a child and I fell pregnant accidentally and didn’t want a termination.
He upsets me at times when he says that I sleep the days away or spend all my time living in my bedroom sitting on the bed. I get very upset and defensive if he uses anything about my illness to criticize me and it can lead to some falling out. I can’t stand anyone using my illness as a weapon against me and will lose my temper rather quickly when it is, but only with people that I expect to understand (people that I love or mean a lot to me), anyone else can just piss off because their opinions don’t matter to me so therefore I find it easy to allow them to go over my head.
My hubby can come out with little comments related to my illness which is when I started to throw it back in his face that the one and only reason I am ill is because I gave him a child and he should be grateful. Also, I tell him he hasn’t got to stay with me so he can leave at any time. I say that if he loves me he won’t judge what I am going through as he is the one that chooses to stay, it’s not me that begs him and makes promises that things will change when I know they won’t. If anything I am a realist.
The relationships with my eldest children changed as I couldn’t do all the fun things that I used to do with them- take them to the park, play with them, go on days out. They have often felt hurt when I have been unable to make concerts they have been performing in or school activities. I cried so hard one year because both my eldest children were in the school choir and I was so ill (even though I had rested all day) that I couldn’t make it.
The children have adapted well- when I go shopping they are the ones that are the care givers, they look after me, carry the bags, push the cart around, pick stuff from shelves, everything really, I just walk round and tell them what I need and they get it for me and put it in the cart. They unload the cart at the till and pack the bags then carry it home for me too. We learned to connect in different ways I have a close bond with them, as due to the illness it kinda made me more emotionally available to them both. I struggle to sit upright on the couch for hours at a time so they will come and sit with me in my room for hours watching tv, chatting, sharing stories.
My youngest child has only ever known me as having FMS so he has been brought up that mummy is ill. He never tried to play fight with me and is truly gentle with me as are the others – but they had to get used to that He is understanding about his mummy sleeping a lot and often can’t do things what other moms do. He has never judged me or said anything to me he just accepts that I am what I am. A mom that needs to be touched very gently, a mom who he jumps into bed with and watches TV if he wants time with me, just chilling and talking. When I have a good day we take advantage and go out with the kids. I love photography so like walking down canals and being around lakes – everyone has to bumble along at my speed but that’s good because it means that instead of a one hour walk it’s 3 so we all get to spend more time together. I often have to sit and stop for 20mins and take pain relief while we are out.
Friendships– I have three best friends and they have been amazing with me. They took the time to understand my illness- one of them teases me sometimes but appropriately, not in a mean way. What is nice is that they all get me, they get what I can and can’t do, they don’t get pissed off with me when I bail on them because I’ve woken in agony and can’t do what I promised. To be honest all of my real friends have been brilliant with me, those that were superficial friends to me didn’t matter to me so I didn’t really care if they got me or not. My friends will take me shopping sometimes and won’t let me carry anything, they walk at my pace, they stop when I need to stop they are patient and caring with me. They never judge me. I am lucky I have lost no friends since I’ve been ill, instead they’re caring and protective sides come out when they are with me, which is awesome.
Was it easy for you to get access to the care and help you needed through private health care, state health care, social security benefits, etc?
I had to go private to get a DX as before that I was called a liar, told it was all in my head, told I was a hypochondriac, that it wasn’t possible to have so many illnesses at the same time. Even though all my blood tests came back clear, they were adamant that I had arthritis and had me at an arthritis hospital because it was the only way they could explain the pain all over my body. I was so depressed that I did have suicidal thoughts. Definitely the worst impact of being un-DX for 3years was on my mental health because I was being treated like a crazy lady who was making it all up. Even after DX at the private clinic it took 2years for the depression to lift (mainly because I had the bombshell dropped on me I had an incurable illness) so had to come to terms with the fact that all the pain I had been feeling was going to be with me forever.
I was then put on a FMS treatment course of the correct drugs (well not correct as some made me worse but it was a starting point) which meant that I was able to start accepting my situation (finally) with someone who believed me and supported me. My consultant is an amazing man and it was the best £300 I ever spent as he put me straight onto his NHS waiting list once I’d explained my situation to him. He found DX me easy as I had kept a nearly daily dairy for 18mths which he spent nearly 3hrs looking at and reading. It was the first time I had been taken seriously about my health.
When I was not DX I got no help at all, I tried and was turned down every time without fail and called a liar too. Once DX the consultant who DX me, wrote to the benefits agency and got me on all the right benefits. I am entitled to Disability Living Allowance which has enabled me to get a car so I am not housebound as often as I was. I can’t use public transport to often due to it being real uncomfortable for me and the cost (public transport is really expensive).
Benefit examinations– The examinations that I had to do for my disability payments were painful and I often left the hospital where I had to go to be examined in tears (and still got turned down), until the last time when the doc who was examining me understood FMS, she was brilliant. She didn’t poke my tender spots, she knew how FMS worked and understood what I was trying to explain to her. She read the report from my consultant and said yes I agree you have Chronic Fibromyalgia which badly affects you. Once the Disability Doc had said that everything was sorted and went well, I am on the right money with the right help now. I find when they don’t understand, they are horrible and mean, I felt so lucky that day to have walked into her office as you don’t always get a doc that knows about your illness. They are literally just there to examine you and then decide if you are telling the truth or not about what you can and can’t do- end of. I had three horrific experiences before I got the good one.
Briefly, what treatments have you or are you trying, and how well have they worked?
I am currently on painkillers (Dihydrocodeine, Tramadol, Paracetamol, Ibuprofen), anti-depressants (Diazepam) and Venalfaxine to help me sleep. I also exercise when possible at the gym.
There are downsides to exercising for me – I am exhausted when I get home and need to rest for at least a couple of hours. Also, I need to take Tramadol & Dihydracodeine before I even think about exercising and again a couple of hours after I get home I will need Dihydracodeine. I have found that if I am having a flare in a certain place (ie: shoulders) that I cannot do the exercises that day that would involve using my shoulders or the pain does worsen A LOT. Same applies to hips, knees and back. I really thought that it would help with the insomnia and it hasn’t at all, unfortunately my body can be exhausted and very ready for sleep but my head won’t allow me to sleep. This can lead to the most fierce, excruciatingly painful flares because my body will be tired from the exercise and will be desperate for the sleep yet the insomnia doesn’t allow for this. The following day I’m lucky if I can get off the bed to go pee never mind anything else (but I am willing for this to be this way rather than being bed bound 24 hours a day, 7 days a week, 365 days a year).
My body has got used to me using exercise to relieve fibro symptoms so if I don’t go to the gym I am in a lot of heavy widespread pain all over my body. The exercise has become vital for me to have pain free or at least pain reduced days (pain-free are so rare that I shouldn’t really say it but it happens once in a blue moon). All I know is that the more strong my body has got, the more reduced my pain has become and the more energy and stamina I have. The Fibro still wipes me out every single day of the week, the difference is that before I couldn’t do anything and now I can do small things, those small things have made a massive difference to my life.
Two years ago I couldn’t walk without limping, and yes it hurt like hell for the first few months, but I pushed on and past the pain and kept telling myself that good would come from it. Although I can only walk slowly, I no longer limp meaning that my hip muscle is no longer deteriorating, actually the muscle surrounding my hip is now strong enough that it supports my hips properly. I have also noticed that I do not trip or fall as often as I used to because I am not limping when walking and my knees and back muscles are stronger so support me better when I am walking. Rather than my shoulders being on ‘fire’ because I am walking upright (which usually meant I walked with bad posture to ease the pain off), they now get very sore but not on fire meaning that I can walk with good posture, again this takes less strain off my back- ALL GOOD !
The same applies to my back I couldn’t sit at all, I was literally bedridden, whereas now I can spend a couple of hours sat up. I still slouch a little when sat as my tail bone in my back doesn’t allow for me to sit upright and I still can’t sit on any hard surfaces, they must be cushioned and soft but I am able to be more mobile, even if it’s just for half an hour, its half an hour more than it was two years ago.
I never used to be able to bend over as my knees would lock up so painfully and the muscles supporting my ribs would go into painful spasms and I would simply keep over, now I can VERY slowly bend my knees (50% of the time) and gently lean forward. All the things above are things I never thought I would do again but through sheer determination and the knowledge that the pain I could feel was not me causing damage to myself helped me keep on pushing and now I am achieving small steps in an upward direction.
The release of endorphins from exercise has meant my mental wellbeing has improved 100% and then some. I have also lost all of the weight that I put on whilst not exercising, I have lost 4stone in 15mths (a good healthy diet included with that, no junk food, all home planned and made, all healthy portions). And it’s the endorphins and adrenaline that = reduced pain YAY. Do I have bad days where it hurts so bad I can’t move? Yea I do so I don’t do anything, I just rest, it’d be stupid of me not to. Just on the days where there is even a spark of energy I use it and go to the gym and it has been worth it on every level.
How I have learned to cope with being a Fibromite is easy for me.
My symptoms are not all of me – I am an extremely positive person who always looks for the good in my days. I tend to focus more on what I do well and have achieved rather than how unwell I feel or what I have been unable to do. Doing this has, however, in the past led people to assume that I am not as chronically sick and as afflicted with fibro as I say I am – they shouldn’t judge what they don’t understand because there is a reason I don’t talk about my fibro. I refuse to talk constantly about how bad things are for me when I have so much good going on in my life.
I like to share what I have achieved – don’t misunderstand when I am having a bad day I sure as heck talk about it, sometimes talking is what is needed. I learned of new drugs this way which my doctor has now put me on and they are working really well. I just don’t like to make my whole life about Fibro because I simply don’t feel that it is what makes me me, nor does it define who I am as a person. I define who I am not my illness.
Life is for living, you only get one shot at it so make the most of the one that you have and always bear in mind “if you always do what you always did, you’ll always get what you always got” this is one of my all time favourite quotes, it says it all. I wanted things to be different for me so I changed what I was doing when I was doing it and noticed that the FMS changed too. Sometimes for the worse but in most, even if not physically, for the better, most definitely the impact on my mental health was, has been and will continue to be massive.
I don’t believe in sitting and crying and saying I can’t do – I believe in getting my arse out there and trying everything and finding out what works for me. It hurt MOST OF THE TIME but am I dead? MOST CERTAINLY NOT. Have I ever ended up in a worse state than when I started? YES SOMETIMES but I deal with it. So I have no intentions of ever sitting back and saying I CAN’T MY FMS WONT ALLOW ME, sometimes it really is a case of mind over matter. I don’t believe in giving up before I have tried something. How the hell anyone can say “I can’t” if they are not willing to try is beyond me. Yes, when the consultant said ‘gym’ I was terrified I didn’t understand how on earth doing it would help, I didn’t feel that I had the strength, energy nor inclination to go to a gym. I was terrified it would worsen how I felt but did I let my own doubts put me off? NO I DIDNT. Why? Because someone who knew better than me was telling me it may benefit me, so I took his advice and look how far I have come. My weight is under control for the first time since I got FMS, it’s stopped fluctuating up and down like a yoyo, I feel mentally better and have more stamina. Has it improved the FMS enough? That I don’t know but I am happy with what has improved (it’s such a slow process as I can’t lift the same weights as normal people nor do anything in a normal way at the gym). But for sure, it is true that what I get out of it emotionally still pushes me to go.
There are times when I am bedridden in agony, cant wake up, can’t move and when I am like this I dont exercise, I dont push myself. I generally do nothing except rest my body because in those instances that is exactly what my body needs.
I also invested a lot of time understanding my illness, how it works, what my triggers are, what food made me ill, what caused headaches, I wanted to know everything so that I could make a conscious effort to look after myself. I do not rely on anyone else to tell me what is wrong I search, explore, learn, educate myself because it is my body and I wanted to know why it worked the way that it did. This really helped me come to terms with the condition too (it was a big part of accepting) I think that’s the biggest thing that I did for myself I accepted that I had a disability. I stopped trying to fight it and get rid of it because let’s face it, that so isn’t going to happen anytime soon. So I accepted the new me, accepted that the old me I knew was gone and she wasn’t coming back and that I had to learn to be a new me. It has been an amazing journey, one that has had way more uplifting moments than pitfalls, a journey that has made me who I am today- a positive strong woman with a determination for people understand FMS and what it does to them.
I honestly believe that with understanding come the first twinkles of acceptance, I just wish people with FIBRO wouldn’t say “I CAN’T” as often as they do, without even trying. I have found that the more I was willing to help myself the better I felt about myself as a person.
The truth is I REFUSE TO ALLOW FMS to define me, it’s in me, it’s a part of who I am, but it is NOT the be all and end all of who I am as a human being- as a person, a woman, wife, mother, friend. It didn’t even change who I was – I chose to change me so that the fibro no longer ruled me. People spend so much time grieving for what they can’t do that they don’t see what they can do. I didn’t want to be that person so I changed, adapted, grew, learned, educated myself and here I am LOUD AND PROUD of everything I have achieved even the smallest of things.
What an amazing and inspiring end to that interview. Lottie didn’t have any self pity throughout the interview, she pushes against her illness and doesn’t let it define her life. She challenges other Fibro sufferers to do the same, it seems harsh but it’s true and she’s certainly encouraged me. Whether you suffer from Fibro or not, she is an inspiration. She is also proof that fibro is so much more than a bit of achey muscles and that ME/CFS is more than being a bit tired. There is so much pain behind that smiling face, a person can be chronically ill even if they don’t look sick, even if they’re wearing make-up, manage to go shopping or attend a party. I hope the posts so far have taught you that, and that the time Lottie took to give this interview will be worth it- that together we’ll help dispel the myths that surround our invisible disabilities. We’d both love to hear your comment- let’s hear some encouragement for this amazing person please readers!