The people behind the illness


ME and fibromyalgia doesn’t mean gradually getting more tired and in pain throughout the day or having occasional days but it means pushing through the exhaustion and pain several times a day. I have to find something in myself to push through and get out bed, to answer the phone, to get to lectures. It means constantly making compromises and never being a good girlfriend, sister or daughter because you always end up not calling someone on their birthday or missing the party, not getting someone a card, never replying to the text or phone call, missing the presentation. Constantly, constantly, constantly apologising and canceling. Having a chonic illness means you’ll never be a woman of your word but always unreliable. You’re always trying to make the decision between being the person who never accepts an invitation or being the person who never turns up. I am so lucky to have a partner who loves me despite the birthday cards and parties he never got. I’m lucky enough to have a sister who loves me despite never getting to be the one who takes the lift instead of the train. A best friend who continues to be just that despite all the unanswered texts, emails, letters, calls, despite my absence when she needs me and despite my never having visited her once, although she travels hours to visit me. I am lucky enough to have parents who will look after me like a toddler when what they really need is for me to be strong for them.

Thank you.

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Carers’ rights day


Today is carers’ rights day, having an amazing carer I am happy to celebrate this day. Nonprofessional carers (by that I mean not employed to care) are among the most vulnerable society, in some cases they are far more vulnerable than the person they are caring for. In most circumstances they cannot get a university education or if they do they are not paid for the hours of care they are giving, pushing them in debt. Even when the government does give them benefits they earn a mere £1.58 per hour for the hours the government acknowledges they do (often the amount of hours acknowledged are way below the amount of hours actually spent on care). This should make you angry. Our carers need and deserve so much more than that. Please send messages of support to our carers today in the comments box below or by tweeting with #CarersRightsDay harsh tag.

For those of you who missed it, my carer, wrote a very informative article about being a student and carer. You can read it here.

Think min.wage is bad- try working for £1.58 an hour…


…no I’m not talking about sweat shops. I’m talking about being a carer in Britain today. We criticize developing countries or big multi-national companies for failing to pay wages which cover the basics- while I’m completely behind that- did you know that all over this country the state knowingly abuses carers? Knowing that carers won’t fail to help their dependents but the state uses them as free or cheap labour. Refusing to pay them an amount that will come close to covering the basics, if it pays them at all, means that quality of life for carers is usually very low. There are so many criteria through which many people working more hours than a full-time job fall through and are not paid at all. My carer, Paul Wilkinson writes about his experience as a carer and a student.

The 2001 census revealed that 1.9 million people provide over 20 hours of unpaid care a week with 1.25 million providing over 50. The 6 million who are paid using the carer’s allowance benefit receive £55.55 a week for providing over 35 hours of care, which works out to disgustingly low amount of £1.58 an hour!

These grim statistics are accompanied by the disturbing revelation that carers themselves are twice as likely to become long term sick or disabled as the average person.

I’m one of the 1.25 million who provide over 50 hours of unpaid care to a loved one. I want to look at the problems faced by carers and the help, or rather of the lack of help, available to them. While I could write endless pages about the plights of the disabled, and rightly so, in this case I want to stick with what I know firsthand. The problems faced by the disabled and carers are, however, interwoven so from reading this I hope you will gain an insight of both sides of the coin.

source: kingston.gov.uk

First things first, it’s important to note that not all disabled people will have carers. Some manage perfectly well without the need of care, or at least get by with relatively little care. Others don’t get the support even if they desperately need it.

A carer has a lot of pressure on them. They are ultimately responsible the well being of their dependent. They are required be on hand literally twenty-four hours a day, seven days a week. Some have to be ready to wake up at any point in the night and then to be completely alert throughout the day because one mistake could set the dependent back months. That’s one of the worst things about disability. It can take someone months, even years, to reach a certain level of health, however only a small mistake to send someone back to the beginning. Due to the lack of provision to support carers, you are essentially never allowed a day off, and definitely not a sick day. I manage to get away for a couple of hours a week but that’s simply not possible for a lot of carers. Insufficient support for the disabled puts a huge burden on carers, and I’m sure a lot of disabled people would agree that sometimes their carers bare the brunt of consequences when systems or other people fail to play the role in help they promised or when the state fails to provide the right care.  This is increasingly becoming a problem for a lot of people because of government cuts. Anyone who works with disabled people knows that often benefits and additional support is cut when clearly that person is in dire need of the support they were getting.

A good example of this is where DLA is cut for people with immobility issues, part of the support they get is specially adapted cars. When the benefit is cut, they lose the car and therefore their independence, meaning that a carer (if there is one) needs to do all of the things the disabled person used to manage to do for themselves. It’s a frustrating cycle.

Many struggle to be able to leave their dependent to go to lectures, so to work, is out of the question. Inevitably, the financial pressure on them can be overwhelming.

If you are a full time student and a carer, whether it is for a parent, sibling, partner or child, the cold reality is that there is no financial help for you. Absolutely nothing. Often when I have made this claim people refuse to believe it. Even professionals (doctors and Support Centre Staff) tell me that it can’t be true. I often get told, for example, that I could just apply for Carers Allowance. It turns out, that in all their wisdom, those running the country decided that you are not entitled to carers allowance whilst in full time education.

This technicality has had massive effects on young people’s lives. For example, imagine an eighteen year old caring for a disabled parent. This 18 year olds household is financially reliant on the Carer’s Allowance, because it is increasingly difficult to live off the government’s support. Despite the popular impression of the ‘comfortable’ life that people have on state benefits, those who are reliant on Disabled Living Allowance, Carer’s Allowance or Incapacity benefit seriously struggle to stay out of poverty. This is something which is getting worse with the disabled being targeted disproportionately in the government’s austerity measures.

Now he or she has ambitions to study at university, however, how can they do so if it will mean losing their allowance and their family falling into poverty? In an impossible situation where the carer is ultimately restricted in a personal and professional capacity. The same restrictions apply to all carers who are trying to find an occupation that could fit with their care responsibilities.

This not only effects the carer, but puts the dependent under a lot of pressure forcing upon them an unnecessarily burden of guilt. Which in turn usually leads a worsening of their symptoms, meaning the carer has to do more, and so the awful cycle goes.

14year old young carer helping her mom

14 year old carer helps her mum Image via Wikipedia

For student carers there is also very little educational support available. When a carer is up all night with a dependent, has to take them to medical appointments, or is unable to leave them alone due to ill health; there is no access to, for example, note takers, lecture recordings or similar resources that are made available for people with medical conditions. Ultimately this means the carer’s work suffers significantly without any recognition from authorities that they have any kind of disadvantage.

It isn’t all doom and gloom. In my experience, University staff have been incredibly helpful and supportive. I’ve been given extra support from lecturers, personal tutors and my head of year and have been offered extension on essays and an exam schedule split over the normal exam period and the re-sit period. I cannot speak highly enough of the individual members of staff who have gone out of their way to help. The problem is, is that this is support has been down to the individual’s discretion. With disabled students, law states that universities do all they can to make sure that they are not disadvantaged. Also, for disabled there is Disabled Student’s Allowance which is used to fund support workers that go to lectures on their behalf.  No such thing exists for carers. Ultimately, a carer’s life can focus around the life of the person receiving the care, if that person suffers an unpredictable illness, such as fibromyalgia, then the carer’s life too is unpredictable. Attempting to fit in full-time care around a full-time university course means being incredibly efficient and organized- that’s something I’ve had to learn. When the system or the routine fails because of a ‘bad’ day then things can easily go into disarray, in many cases, carers either fail or prepare properly or even fail to attend assessments. Until there is official recognition for carers, they are always going to be in a precarious position.

I must stress that I do not intend to give an impression of carer’s being more hard done by than disabled students. Disabled students face a massive uphill struggle in university. My comparison is merely to reflect what could be done to help carers level out the disadvantages they face. Also I don’t mean to paint a picture of a carer’s life being miserable. It suits my purposes, however, to focus more on the disadvantages one might face than the aspects which are rewarding.

There is a massive lack of awareness of both the disabled and carers in university and in the wider world.  Something which I hope will be addressed soon in order to give some of the most vulnerable and most gifted persons an equal opportunity to excel in life.

One of things I have seen frustrates Paul the most is that not only is there not a forum to voice your frustrations and affect change, but very few people care. He said to me this morning that he could tweet all day about carer’s allowance and no one would reply or re-tweet but if he wrote about Justin Bieber he’d get tons. Thanks for reading this post- will you help to raise awareness?

Justice will not be served until those who are unaffected are as as outraged those who are – Benjamin Franklin

SIMPLE PLEASURES: everyday life


Our normal routine, our everyday life is the very simplest of pleasures that most of us miss. It’s an awful irony that we only realize how blessed we were every single day, when something awful that puts those things into jeopardy. It’s only when someone has an accident that results in paralysis that they realize how lucky they were to live without a disability. It’s only once you get ill that you realize that you took a good night’s sleep for granted. For me, I’ve come to realize how lucky I am that I only have fibromyalgia and CFS/ME. This hit me one day on a hospital visit, I was looking for the right ward when I read ‘teenage cancer’ on the sign and right there and then I thanked God that wasn’t where I was going that day.

I found out recently that a family friend has been diagnosed with pancreatic cancer. Although I am not close to this person or his wife, they are my parents friends, this has caused me a lot of grief because I can’t imagine how painful it would be to lose Paul. I think about all the things they’ve already done for the last time without knowing- the last holiday they went on, the last birthday. My parents are going through an awful time in nearly every area of their life but they have each other. I know that I would take any suffering if I could have Paul with me. These friends have lived a good, comfortable life but I know all of that will feel empty when she looses her husband.

This is something Gretchen Rubin tackles in The Happiness Project. It seems too morbid a topic to have in such a book, but realizing that bad news is only ever a phone call away makes you realize how lucky you are. None of us are exempt from the call telling us a loved one has been in an accident or that the test results are not good news. In a twisted way it is other people’s tragedies that make us thankful for what we have. Nothing can bring us security, we can work all our lives for a retirement fund that disappears in a few days in a global banking crisis or loose all our possessions in a house fire or natural disaster. We tend to think that because we worked for something then we deserve it, and we do, but just because you bought it, because you’re a good wife or husband, because your parents love you unconditionally does not mean it will be there forever. In reality we never really own anything, it can be taken in an incident is what I’m trying to say.

In my Church, we have a saying- everything is a gift. Don’t take anything for granted. We can’t live everyday as if it were our last, I’d have no money for starters and I would spend a lot of time on tearful conversations and making funeral plans. But, we can live a fulfilling, satisfying life. In the Bible it says to live life in all its fullness, sometimes that means doing not very fun stuff like being good with your finances so you have a roof over your head, but I’ve learnt not to see these things as a drag, I am so thankful that I have money to pay my gas bill, unlike many people right here in the UK. Instead of seeing things as a drag, I turn it on its head and I see the blessing, instead of missing the blessing. It may sound saintly but I’m happy than I’ve ever been. The other morning, I woke up really early in pain, instead of moaning at how unfair this is and how tired it made me, I thanked God that being in pain meant I finally got around to doing some stuff. I have a really short attention span and a bad memory so it takes me so long to get around to doing stuff so being stuck in the bathroom made me do some internet shopping I needed to get around to. Later on, I feel asleep with my head in Paul’s lap, usually he can’t sit down for more than a couple of minutes but because he didn’t want to wake me, he chilled out on the sofa watching TV, something he barely ever does.

So, thank God or the universe or just be happy that you are so very blessed today, no matter how little you have.

Fibro awareness week: Lottie’s interview


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*

 

Recent photo of Lottie- would you guess she suffers from fibromyalgia?

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.

  1. I have widespread pain mainly in my shoulders, back, hips, knees, elbows, hands & left side of face.
  2. 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.
  3. Major sensitivity to cold water & cold weather
  4. I have hot & cold flushes
  5. Nausea
  6. Light Sensitivity
  7. Headaches & migraines
  8. Muscular fatigue
  9. Sleep deprivation
  10. Insomnia
  11. Lack of quality deep sleep- ‘I don’t go into stage 3 REM sleep hardly ever’ so no restorative sleep.
  12. Muscle spasms
  13. Shaking & Jerking of body all over, like twitching
  14. Loss of appetite
  15. 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.
  16. 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.
  17. 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.
  18. 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 examinationsThe 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.

Lottie's weight loss time line

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.

 Closing comments:

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!

Fibromyalgia awareness week


When I posted a link to my ME story I had no idea the huge amount of messages of support I would receive through various forms of social networking. This has really encouraged me to share a bit of my personal health issues and use this blog to raise awareness.For about the past year or so I have had to keep increasing my dosage of painkillers (particularly after my DLA medical examination), for a long time my muscle pain seemed to get worse and worse. Last year it became blatantly obvious to myself and my doctor that my symptoms, particularly my pain levels,seemed incredibly extreme for a ME/CFS patient. My doctor knew that even though it was doubtful I would find a cure, I needed a proper diagnosis. Various hospital appointments and tests revealed what I had suspected and feared, I had also developed fibromyalgia in addition to my pelvic pain and ME/CFS. Last Sunday was the beginning of fibromyalgia awareness week and I wanted to use my blog to raise awareness about this little known illness. I really hope that you, my readers, will be as welcoming and willing to learn about this condition as you were when I published my ME story. I’m going to publish a few different posts telling not just my story but those of other sufferers and the inspirational way in which they manage to cope with their condition. I was hoping to have started these posts on Sunday but in true Fibro-style I haven’t been able to manage getting any up until today so the posts will probably continue a little past Saturday. Please help raise awareness by sharing this post on Twitter, Facebook, Linked in or on your blog.

Like ME/CFS, fibromyalgia is an invisible illness and there are few physical symptoms, it isn’t necessarily easy to spot a sufferer (or fighter as most like to call themselves). In this post, I want to share what exactly fibromyalgia is. I’ve adapted this information from various patient leaflets, websites, etc.

What is fibromyalgia?

Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.

The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.

People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment. If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain.

Note: It is important to notice the distinction between the levels of suffering of Fibromyalgia patients and to recognise the different ways in which a patient can both suffer and manage their illness. Some are able to manage with a slower pace of life, others like me are confined to wheelchairs or worse still bed-bound. Put simply-everyone is different.

What causes fibromyalgia?

The actual cause of fibromyalgia has not yet been found. Over the past several years, however, research has produced some insights into this puzzling condition. For instance, it has been known that most people with fibromyalgia are deprived of deep restorative sleep. Although I sleep really deeply, no alarm can wake me up, research shows that my body never goes into deep sleep but is disturbed.

Research has identified a deficiency in Serotonin in the central nervous system coupled with a threefold increase in the neurotransmiter substance P, found in spinal fluid and which transmits pain signals.

The effect is disordered sensory processing. The brain registers pain when others might experience a slight ache or stiffness. It is hoped that more research will discover the cause and result in more effective treatment.

Current Treatment

At the present time treatment for fibromyalgia aims at reducing pain and improving sleep. In other words, some of the symptoms are being treated, rather than the condition itself.

Pharmacological management

Over-the-counter medications may help relieve the pain of fibromyalgia but severe pain may require the expertise of a pain clinic.

Medications most often prescribed for fibromyalgia are tricyclic drugs also used to treat depression although doses for fibromyalgia are much lower than for depression. In some cases these drugs will help both sleep and pain.

However, many people find available medications either insufficient to control their symptoms or difficult to tolerate due to a high incidence of adverse effects.

Support from family, friends and other people who have fibromyalgia is extremely valuable to those who have fibromyalgia. Professional counselling may help some people to cope with this illness and to take an active part in their own treatment. For more information on medications please visit www.fmauk.org/medications

Learning to manage the condition seems, so far, to be the most successful way of dealing with fibromyalgia.

A combination of heat, rest, exercise and reducing stress can enable some people with fibromyalgia to maintain a productive life.

Managing Fibromyalgia

The best way to cope with fibromyalgia is to use a number of techniques that ease the symptoms as much as possible.

Relaxation is one technique that works really well for almost everybody with fibromyalgia. It reduces tension in the mind and body right away. The results are calming for all the symptoms, especially for the pain. Relaxation can be learned from books, tapes, videos or special courses.

Heat is important. A hot water bottle and hot baths or showers will help reduce pain and banish morning stiffness. Soaking hands and feet in hot water for a few minutes can ease their aching.

Although no particular diet has been shown to help fibromyalgia, a healthy, balanced diet is important to provide protein, vitamins and minerals. It is best to avoid or at least cut down on coffee, tea and alcohol. Some sufferers have a tendency to gain weight and this can be distressing in itself.

People with fibromyalgia can have good days and bad days. On a good day it is important to pace yourself; overdoing it may simply make matters worse. Rest is also important.

Other symptoms

Besides pain and fatigue, fibromyalgia symptoms often include:

  • unrefreshing sleep – waking up tired and stiff
  • headaches – ranging from ordinary types to migraine
  • irritable bowel – alternating diarrhoea and constipation, sometimes accompanied by gas in the abdomen or nausea
  • cognitive disturbances including lack of concentration, temporary memory impairment and word mix up
  • clumsiness and dizziness
  • sensitivity to changes in the weather and to noise, bright lights, smoke and other environmental factors
  • allergies

If you’ve read this entire post, thank you so much! I know it’s pretty long and probably not very interesting but there is no easy way to describe fibromyalgia. Look out for more posts coming soon which will give you an insight into the lives of fibro-fighters including interviews with other sufferers and “the secret language” of auto-immune and neurological disorders including fibromyalgia, ME/CFS and lupus.

The state is disabling the disabled


This guest post was written by my boyfriend and carer, Paul. He is only 20 but is my full time carer, I won’t go through the indignities of listing all of the things he has to do for me everyday, but trust me when I say everything, I mean every little thing. I suffer from invisible illnesses so even though many people have told us there is all sorts of help and support available, this simply isn’t true. I get some level of DLA but the real amount of care I need is not recognised by the DWP. The state will not provide the support I need, my parents are ill themselves and not in a position to care for me, and now I am lumped into the category who are thought t be unfairly claiming DLA. I may not look unwell, when my friends see me, it’s hard for them to see any difference in me, but my doctor told the DLA my medical record, how I turned up at her office screaming in pain, and in my pyjamas, but that doesn’t make any difference. The truth behind the cuts to disabled benefits is ugly, and I can’t bear to write about it myself so Paul has written a guest post telling our story in the hope you, the reader, will listen and stand up for all of those too ill to fight for the support they need.

This week the Department of Work and Pensions have announced figures finding that only 7% of incapacity benefits claimants that they have tested are ‘unfit’ to work; 17% could work with the proper support and 39% were moved to Job Seekers Allowance.  Before you sharpen your pitchforks and light the torches I urge you not to take these statistics at face value. These findings are clearly bias at best.

Firstly, consider that the government have committed themselves to cutting the cost of benefits on the state and helping get the sick back to work, giving targets not linked to any research, so for example the government intend to cut say 17 people, they will find a way to cut those 17 people. The government want reduce the Disabled Living Allowance (DLA) bill by 20%, unless they’ve discovered a universal miracle cure for people’s illnesses, it will mean that some of the most vulnerable in society will be placed in an even more precarious position. DLA is not intended for people who are not working, it is given to all disabled people in recognition that they have extra costs and difficulties in their day-to-day life, for example people whose mobility is severely restricted are able to borrow a specially adapted car so that they are able to drive, this obviously helps disabled people into work, it is not free money, it is the support urgently needed. Only those who go through the invasive, degrading and timely system are able to get it. Incapacity claimants receive a higher income than those on Job Seekers and since May 2010 the government has attacked the position of the disabled through cutting. In light of this I find it hard to see how the intentions of the DWP can be viewed as legitimate.

As a carer, I have witnessed the application of disabled benefits and medical testing first hand. I can assure you that the process is far from neutral. The application itself is ripe with questions designed to ‘trip up’ claimants. The most scandalous part, however, is with the medical tester. They are committed under exaggerating the level of an applicant’s illness. They will look at a claimant looking to prove they are fit to work. In my experience, part of the reason why my girlfriend was refused was because she smiled, we were astonished to see that in her report. Even more incredible was that the examiner noted that she seemed very awake and alert even though she was actually sleeping in the waiting room when she was called. Additionally, few people are approved for DLA because of one disability or illness- it is well known that several disabilities are needed to get approved.  As a result a large number of applications will go to appeal, even when it is obvious that they are certainly too ill to work, and 39% will be overturned. The testing is thorough and always pitted against you. The system works on the assumption that you are lying unless you can prove otherwise, even letters from doctors are ignored a lot of the time. The DWP no longer carry out tests at patient’s home, as recognised by a recent parliamentary paper, it is incredibly difficult for a lot of very ill people to even get to the medical examination and often has a negative impact on their health. For Kate, she was pushed incredibly far beyond what her body could cope with at her medical examination in October, and she has never fully recovered, her medication dosage had to be doubled. The idea that 93% of those who had gone through the process, and managed to be approved, would be fit to work and had fooled the DWP is absurd.

The figure for 36% dropping out of the process also needs to be seen in context. Do not interpret this as 36% of claimants dropped out because they don’t have a legitimate claim. A large number of applicants will be suffering from mental health problems meaning they won’t have the capacity to complete see the application through. Unassisted the process can be overwhelming for those unable to work. Social services are very over-stretched so it is not always possible for to get a social worker. I heard of one case where a man whose mind had been classified as that of a three year old  lost his DLA payments, how is sufficient care going to be provided? And who will support the disabled who are no longer able to be independent without the aids they are lent?

For the 17% that could work with sufficient support. What level of support would this require? And where is this support going to come from? If it is employers responsibility to provide the facilities then where is the encouragement to hire someone with such extensive needs? DLA was created to provide this support. And with rising levels of unemployment who will employ a disabled person who will need lots of support, at the cost of the employer?

If these figures tell us anything, it shows us the intentions of the government and the DWP to cut the cost, no matter what the consequences are. Empty statistics such as those published this week are all about justifying the cuts to the public because they know that those on these benefits are not well enough to make their voices heard. Will you stand up for them?