ME Awareness Day


Yesterday (May 12th) was ME awareness day. The regular readers among you will know that one of the conditions I suffer from is ME (also known as CFS), and I’m passionate about exposing what it is really like to live with that condition. On that note, one of my new projects while I’ve been going through a very bad patch of health lately (told you I end up with loads) has been to set up a new a blog about my life. It’s much more personal than this blog, because if it wasn’t  then I wouldn’t be telling the truth. It won’t consist of post after post of whining, I’m just writing about my life and in that (hopefully) it will become obvious to the reader, the way in which my chronic condition affects my life. I really hope you’ll check it out and read it as loyally as you do this blog. I’ve named it Chronically Katie, and there are currently three blog posts for you to have a gander at to get the flavour for the blog, as well as two pages explaining more about myself and why I decided to start the blog. Please feel free to share a link and help me get the word out and give some constructive feedback.

Happy Sunday!

Link- www.chronickatie.wordpress.com

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Wish you were here


In an earlier post I mentioned how I always take up lots of projects when I’m stuck in bed. As well as being surrounded by loads of books, papers, pens and my typewriter, I now have lots of postcards of Cardiff to add to the pile. What could be my new project? Well actually I’ve gotten involved with someone else’s project.

Like most people my age, I would love to travel, but at the moment I’d be lucky to make it to the cinema because of my health. And, of course, the hurdle to most people- cost. So when I read about the Postcrossing experiment, I was more than excited about it. As fast as my little achy hands could, I typed in the web address and signed up.

You must be wondering what sort of project could get me so keyed up (pardon the pun). Postcrossing members exchange postcards with each other. I would have been sold at that, I love postcards and handwritten letters. I always collect and send them wherever I go. More than that though, Postcrossing is international so members get postcards from all across the world. When you sign up, you are given the address of strangers to send postcards to, and in turn, strangers are given your address and send postcards to you.* My first postcard was from Malaysia. Members can also browse each others’ profiles and request direct swaps. I am feeling very popular because I have already had a few such requests.

As though it were made for me, Postcrossing combines so many of my favourite things. The founder, Paulo Magalhães, is bringing back the wonderful tradition of handwritten postcards. I can’t wait to learn about the lives of people all over the world. How can you have possibly finished this blog post without clicking onto the site to sign up?

As a special offer I will send a unique postcard about where I live for the first three people to request it.

Do you like sending postcards or are they redundant with texts, emails, Facebook, etc?

For more information on Postcrossing, visit the website www.postcrossing.com

*For those of you who would be concerned about posting your address on the internet (and you are right to be), your address is not published on your profile but only given to members who are selected to send postcards to you. Clearly it’s not full-proof but I feel ok about a few random people who lives hundreds of miles away being given my address and nothing else.

When the chips are down


In the last few weeks I have gone through a really bad patch with my illnesses. Whenever this happens, I try to keep my spirits high by forming habits like writing down three things everyday that I am thankful for, or a list of activities I can do when I get bored. At the moment I’m trying to think of easy one-day projects I could do.I love little projects, especially creative ones, but I often get bored before I complete them so I’m trying to stick to attempting do something which will only take one or two days, and not much energy. We all have little things we like to do when the chips are down, what are your favourite things to do when you’re sick? Any ideas for my one day projects?

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.

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.

The next step on my journey


Although I didn’t expect to learn much through doing my fibro awareness posts, I have. It’s the first time I’ve ever been in contact and chatted to other sufferers and it’s been a bit of an eye opener. It’s made to realise and come to terms with the fact that part of the reason I always feel so rushed, panicked and like nothing is getting done properly is because I’m trying to live a life which would be very busy without any illnesses, let alone someone with CFS and fibromyalgia. It’s not giving up to admit that and neither is tailoring my life so I’m not stuck in a cycle of depravation- always over-doing it, paying the costs and then being frustrated because I can never sustain a schedule.

Things have got to change. Part of that was actually writing down my “ideal” schedule- exactly what I would want to achieve everyday or every week- it was ridiculous so I’ve put some stuff on the backburner for now instead of trying to do everything at once. In honesty, that wasn’t enough, even after I cut out as much as possible, it was still obvious that I would still be doing too much. I had to make some tough decisions in reducing my work load in EVERY area of my life, including this blog. I have never been able to post as much as I always planned to on this blog and by rushing posts, I have sometimes compromised quality (if I’m honest)- re-reading some of my earlier posts made that obvious to me. I am, therefore, cutting back the features on this blog to what I think are the best parts and you may be seeing a few less posts on here but I promise to make them really good. I really hope my readership doesn’t go down as a result of these choices, I love each and every comment and subscription. It is a great moment in every bloggers life when someone signs up to be notified when a new post is published. It’s even greater to look back over the first year of blogging and realise how much more successful your blog is than you’d hoped and how it has grown.

Part of being a good blogger/writer is knowing what works and what doesn’t so I won’t be posting any more film reviews or sports time posts regularly, I will, however, be leaving the pages up so you can access old posts and I won’t completely close the door on the possibility of the occasional post in these areas.

And, I will be adding a new feature- inspiration of the month. Every month I will be choosing a person who inspires me and I’ll write a post on them and why they inspire me. If you know someone inspirational who deserves to be honoured then please contact me on the email address below- I am open to all submissions.

As you read in an earlier post, I launched my own small business this summer (eek!) called Pandora’s Box. In brief, Pandora’s Box grew out of the home-made posts on this blog. More and more I’ve realised my passion for vintage/retro items and remaking old things into new is something I want to share. Vintage shops and markets can be really expensive and so can handmade products so part of what I do is making sure all my products are really affordable, meaning that my products are cheap but I don’t make a huge profit but I’m ok with that for now. I love individual things but my flat is small and I can’t fit it all in so I’m happy to pass on vintage finds and home-made treats to happy customers. You can find out more about it and view items on the page here. I will post updates here on my blog for you to see and if there is anything which you love in a home-made post but for whatever reason don’t make yourself, you can request me to make it for you in the comments section on the post or on the Pandora’s Box page.

Related to this, as part of the Etsy community, I come across other great and very talented sellers- look out for posts for my favourite Etsy finds.

Most of all, I’d really like to take on guest posts, I welcome any and every proposal so whatever you feel you might want to put on screen and have published here, you can get in touch with me by email: kate.bennett@live.com

Thank you loyal readers,

Katie x

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.

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 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!