Crying Dry Tears: Another Very Hard Post To Have To Write

This time last year I wrote a post about how I had been recently diagnosed with Rheumatoid Arthritis. At the time I was feeling lost as having to accept this strange life I had suddenly thrust upon me. I don’t think I was thinking about how I would be in one years time. But I am sure I though I would be on a treatment plan and in some form of remission. What I certainly wouldn’t have expected was to be now battling two primary auto-immune diseases and two secondary conditions. It is the gift that keeps on giving.

I still have a form of inflammatory arthritis, possibly Rheumatoid but now suspected Psoriatic Arthritis. The two conditions are similar enough not to go into explaining them, swollen joints and no end of pain. I was coping with this knowledge when I got slapped in the face with a second diagnosis of Fibromyalgia to explain the extreme fatigue side (many Auto Immune disease overlap with symptoms so diagnosis can be difficult, the fatigue could be part of the inflammatory arthritis but it may be a condition entirely on its own. Hell I could write an entire blog on that subject never mind one post). I describe it as a slap in the face because I was furious at the rheumatologist for giving it me. He didn’t give me the disease of course, so it was a case of shooting the messenger. I’m not so sure why I was so angry about it, mainly because I had enough problems but also because Fibro has so much stigma attached to it. It wasn’t until fairly recently that Fibro was medically proven, it is for the record a neuro-muscular condition. Put simply some chemicals in your brain don’t work quite right causing you to feel constant pain and extreme fatigue. The severity can alter day to day and from person to person. But the thing that is tricky about it is that it is hard to diagnose. Today a test is done which involves scoring pain when a set of points on the body are pressed. Brain scans can also show neurological problems but these tests aren’t done as standard. So you would think with all this medical evidence that would be that. Yet because Fibro was not proven for so long it developed a stigma that it was an ‘imaginary’ condition, that people claiming it were just lazy. Then you get idiot journalists writing this load of old tosh in the Sun:

ÔÇ£My New YearÔÇÖs resolution for 2012 was to become disabled.┬áNothing too serious, maybe just a bit of a bad back or one of those newly invented illnesses which make you a bit peaky for decades ÔÇô fibromyalgia, or M.E.ÔÇØ

ÔÇ£And being disabled is incredibly fashionable. The number of people who claim to be disabled has doubled in the past ten years.ÔÇØ

ÔÇ£I think we should all pretend to be disabled for a month or so, claim benefits and hope this persuades the authorities to sort out the mess.ÔÇØ

Ron Liddle

If I was ‘a bit peaky’ it would be a relief. I would love to be a bit peaky. Instead I have days where I sleep right through them. I have days where I can only curl up in a ball because I feel like every single bone in my body is being crushed. Because of this illness I was pushed out of a career I had been to university for the last eight years, leaving me with an insane amount of debt that I was told I could easily pay off once I got this job I had worked so hard for. It isn’t fun having to stay at home all day. I actually do not claim benefits but if I did I would bloody well be entitled too, being a tax payer and all. I might like to be fashionable but this for sure is not one I would recommend following! It goes without saying that Liddle is ignorant and a lazy journalist who cannot be bothered to actually research the illnesses he mentions. He is like many other ‘journalists’ looking to stoke a fire and get┬á a bit of attention. Much easier than researching and writing a brilliant piece of journalism. But the point is he, as a journalist for The Sun, wields a lot of power. The power to reenforce stigma about a genuine illness. Many people will take what he says as the truth, they will not bother to go out and research what these diseases really are. It will stay in their minds, that these are ‘made up’ and people who claim to have them are not really ill at all and hey if they are also claiming benefits then they are spongers too. These diseases are not new, but the advances in medical research are, allowing them to be identified and further defined.

Things haven’t really changed all that much for me, I have extremely bad days, yes, but mostly I have OK days which is fine by me. I haven’t responded well to any of the treatments yet. There are more to try and it is a long process but I have no choice to stay hopeful for the next one. Taking so many medications have their own pros and cons. One weird one is that one of the meds I am on seems to be amplifying the condition Sjogrens. The first thing I noticed was how dry my skin was, then my nose and my eyes. All easily eased with lotions and drops. Then my mouth got really dry, it is too hard to explain how that feels. All your teeth hurt, so I have artificial saliva. This is totally gross, it feels like having someone else’s spit sprayed into your mouth, why on earth they didn’t think to make it mint flavour I don’t know! Then I was having a bad day and burst into tears, but no tears came out. Not one drop. I can’t cry any more. Which is strange and a bit funny, but also so very sad.

One good thing I can say has come out of all this is that is has given me more time to pursue working in fashion. It felt right in a way walking away from my old job, it was a weight lifted. I don’t know what the future will bring, we shall see. I’ve always been a big believer in fate.

As a result of the Liddle debacle, sports commentator Mark Robson spoke out, he give a very accurate description of what living with M.E is like (M.E and Fibro are very similar diseases).

Sports Commentator Mark Robson talks about living with ME (mp3)

80 thoughts on “Crying Dry Tears: Another Very Hard Post To Have To Write

  1. I did think about how you were getting on many times, and when I have to take an antiinflamatory, somehow, I always think of you ( now that my right knee is ok, the left meniscus is broken so start all over again).
    Iam alsoa firm believer in fate.
    Much love and a big hug, dear Pearl.

  2. oh pearl im so sorry to read this 🙁
    you’re such an interesting and active person i always forget that you’re held back by your arthritis – and now this fibromyalgia. i have some issues with my knees so i can imagine what it must be like to have aches and pains in all your joints/bones/muscles. i applaud your strength at not only getting on with your life but also speaking about it to set the record straight. hope things get better for you, sending you hugs over the net xxx

  3. Hell, hun. Wish I could make you better. Don’t know what else to say! ‘Sorry’ seems a bit of an understatement in your situation. Hope with this extra knowledge that maybe different meds can be proffered that suit you better and don’t add to your woes.
    Big, but gentle hugs
    Z xx

  4. What an ignorant blanket statement! It’s really frustrating at how normal/healthy people can’t imagine what it’s like to have a crushing immune system disorder, so they just all assume it’s mental. It took me three trips to see three separate doctors before I was finally tested and diagnosed with chronic mononucleosis, since it was undiagnosed for so long it spread into my liver, giving me hepatitis. I’ve been home recovering ever since, and it’s taken me over a year just to get my appetite back. So I know how you feel. It’s not fun being doubted when you are in so much pain to begin with already.

    • Well said Lauran, it is hard enough having to go through being so ill without having to fight medical doctors on top of it! The average diagnosis time with RA is 5 YEARS!!! It is disgusting, I know I wouldn’t have been diagnosed so quickly without my own research and sheer bloody mindedness. Take care xx

  5. I feel your anger at that Liddle guy. People are such jerks and it is so insulting when actual disability and chronic illness is a total nightmare to live with.
    I thought you might like this: An old lady from church came to see us at the gallery on Friday. She’d spotted me at the healing service. She had ME when she was 30 and was nearly bed bound for 11 years but then she got able to do stuff again (yay for her! =] ) and she wanted to give some encouragement as she knew what it was like to be a young person and not be able to do everything your peers are doing. It was really sweet 🙂
    Not long till my reumatology appt now =S

    Love you Pearl, *hugs*

    Florrie x

    • That is so lovely of her, one of the ladies in my group, she is 25 has been suffering since 18 with RA and has just entered into remission, all thanks to finding the right drugs for her. She is the first one out of 81 of us to finally get some good news. Some have been suffering even to get a correct diagnosis for over ten years. Some are in the US and cannot even get treatment as they were forced out of work due to ill health and with that lost their medical insurance. So it has been a real eye opener but we have no choice but to keep going and hope for the best! Much loves xxx

  6. Pearl, I was to write a lovely thought-provoking comment, but it would be a repeat of what others have already written. I admire your strenth and thank you for sharing this. I hope that you find a treatment which suits you, and new advances are being made, so there is lots of hope xx My friends mum has Fibromyalgia, so I know what a bugger of an illness it is… stay strong Lovely and keep doing what you do so beautifully and articulately xx

  7. Well give us a big ole smile, and join the club. I have met some of the strongest people I have ever heard of or knew, right there in that group of people who go to sleep at night, not knowing how much pain they will be in the next day. now we never know, we never plan, we miss everyone!

  8. Dear Pearl, there will always be idiots. It is part of life, but a very large part of having such a painful and difficult condition as you have. Your anger is so right and I believe it will help you come to terms with something that influences your life to such an extent.
    Warm yourself in the love you receive from friends and family and remember that you give so much pleasure to so many people. By being who you are and sharing your experiences and opinions through your blog. You have many fans!
    Wishing you strength and hope.

  9. Oh Pearl, I do wish there was something that could be done. I think you are so brave for speaking out about your experience of these illnesses, and even braver for chasing your dreams despite your suffering.

    I am lucky enough to be in good health and never realise how much I take that for granted until I hear of people in your situation.

    Keep smiling & keep hoping. Sending you a big hug! xxxxx

    p.s. For want of a more ladylike expression I wouldn’t wipe my arse with The Sun (a schoolfriend of my boyfriend’s was murdered by a rejected suitor and their front page accused her of being a prostitute – on absolutely no grounds – which was total fabrication and of course they never apologised).

  10. I can’t tell you how sorry I am to hear this and was wondering about your health and how the treaments were going since the last fashion week you covered.
    It may not be any consolation at all but half the battle is getting the correct diagnosis in the first place so I do hope and pray you find the right treatment now and you will have more and more better days.
    I’m also a believer in fate so it’s great that you get to do more of what you are passionate about and love too.
    All the very best wishes.
    Love, CC xx

    • It is the most frustrating part I agree, it took 6 months before I was sent to the rhumatologist and now they cant even agree on what the exact problem is. But we are closer to figuring it out and for that I am grateful! xx

    • Thanks Pammy, I am ok I take it all in my stride, it does get frustrating though when it gets in the way of things I want to do xx

  11. Pearl, my heart really does go out to you. Illness and disability appear so arbitrary – so bloody unfair and uncontrollable. I remember how sad I was when I read your initial post (still remembering your kindness when I went through surgery), and this only increases the feeling. To finally meet you at lfw was a pleasure – and you are so nice, and vibrant. As others have said, I think we hardly appreciate what we have until it has been cruelly taken away. Liddle and his ilk are ignorant to the point that (to paraphrase the Great Gatsby) they hardly know that they’re alive – or at least how lucky they are to be in full health whilst spewing nonsense. To reduce something that serious to a joke displays a complete lack of knowledge, made up for with a big dose of stupidity and judgement.

    I am sending you the warmest love and wishes, and hope that you will eventually find some way to cope. But you have every right to be angry and upset. I would be if I was in your (hopefully still wearing them) Vivienne Westwood shoes. Plus, I can really understand that desire to shoot the messenger – I was furious with the consultant who delivered the news that the curvature of my spine had increased (although in my defence, the hospital should have acted sooner).

    Lots of love, Roz xxx

    • It was so lovely to finally meet you too Roz. How you have dealt with your own health battles an inspiration. Nothing will part me from my VW shoes and they and myself will be seeing you at LFW again in just a couple of weeks xx

  12. Hi Pearl, I really respect you for the consistent quality of your blog even going through all these bad days. I have a colleague with Chronic fatigue syndrome, which I know isn’t the same, but it’s also one of those diseases people find hard to grasp. I cannot imagine how frustrating it must be battling the prejudice and ignorance. I know it’s not sympathy you’re looking for, but I can’t help feeling sad reading this. I wish you all the best!

    • Thank you, sometimes I wish I would just turn bright blue with yellow spots or something so people could see it! Chronic fatigue does have somethings in common, one of the hardest things is all of a sudden having zero energy. I am fairly used to it now and can tell when its going to happen but in the early days, I couldn’t understand it myself let alone try to explain it to anyone else. My friend Rich is the best, he always makes a drama out of it to make me laugh. One time we were on a packed train and he started shouting at the top of his voice ‘make way, shes not well’ I was in tears it was so funny, it did get me a seat though! xx

  13. Hi my dear-so sorry to hear that your health is still suffering though I sincerely hope you manage to follow your dreams of a fashion career. You’ve constantly shown through your blog and your array of lovely outfit posts that you will definitely succeed in this area of your life. Wishing you lots of hugs and hopefully an end in sight to getting a correct diagnosis, take care xxxx

  14. I’m very sad to hear this. It is humbling how much strength and thoughtfulness you show when talking about things.

    It makes me so angry when the trash papers talk rubbish about so-called ‘invisible’ illnesses. How sad and empty it must be to require people to ‘look’ ill before you give them a grain of sympathy – the sad thing is half the people who nod at this kind of trash journalism probably know/are related to someone with an invisible condition and either don’t realise or think ‘that doesn’t affect ME’. Prejudice affects everyone and needs stamping out.

    • Rightly put Perdita, it winds me up so much just how stupid people are, he really should be made to realize how wrong he is and also how much damage he is doing reenforcing these stereotypes! xx

  15. Dear Pearl I still remember that post who wrote a year ago! I’m sad to hear about how things are now and I wish you all the best to get back in health. Reading about that journalist made my nerves pop and I believe he should have apologized for being so superficial!
    A big hug

  16. I’m so sorry to read this and I completely feel for you. My “story” isn’t nearly as bad as yours – I counted myself lucky after read this – but there are similarities. About two years ago, I was trying to study for my work exams and noticed that I couldn’t grip my pen without it being very painful. At first, I wasn’t concerned because I’d had trigger finger before and I thought this was just that but it didn’t clear for over a week so I went to the doctor.

    Two years on, I still don’t have a proper diagnosis. And I still can’t really write properly (on a bad day, you can add using a mouse and typing to that list. On a really bad day, you can add brushing my hair, shaving and using cutlery). The long list of doctors and nurses I’ve seen have all been kind and, all bar two, took it very seriously (only on two occasions – new GP in both cases – was I told to take ibuprofen and it would go away). But it’s a lot of being stuck on waiting lists for things and lots of experimenting and trying things out. I think they’re as frustrated as I am! So far, we’ve tried physiotherapy for carpel tunnel syndrome, physiotherapy for neck and shoulder (sort of helped but not really enough to be comfortably operating day-to-day regularly), x-rays and sessions with chiropractor (paid for these myself – x-rays showed scoliosis and some damage in the neck but sessions didn’t really help) and an assessment from a neurologist. Most recent – EMG recommended by neurologist – which indicated that there may arthritis in the right hand side of my neck but I’m now on the waiting list for an MRI to find out.

    I was originally going to tell you to ignore Mr Liddle as people only read The Sun for the boobs anyway and nobody with an IQ above 10 thinks like that. But this isn’t entirely true because I do know plenty of supposedly intelligent people who, probably not quite so brashly, do hold a similar opinion – up to and including my past self. I think it’s because until you start suffering with chronic pain, you don’t actually realise how crippling it is. Admittedly, whilst I did try and be understanding of chronic pain and am not as downright stupid as Mr Liddle to think that everybody on benefits is just a work-shy freeloader, I did secretly think at the back of my mind “Come on – seriously, how bad can it really be?!?”. Maybe I should go hang my head in shame….

    I think there is a wide spread ignorance about chronic pain – I can understand why the ignorance is there but that doesn’t make it OK and, ultimately, it’s damaging. I’m quite lucky at work in that it’s a pretty big firm so HR have seen this type of thing before so they are pretty patient with me but I worry that their patience will eventually run out. More worryingly, I’m not convinced all of my immediate managers are understanding. The worst “myth” I find myself fighting is that I’m at the same level of pain all the time. I’ve got comments to my face like “But I saw you typing/writing fine the other day….why can’t you type now?” which just makes me want to scream!

    I’m not entirely certain what the point of this comment was but I assume it was important because I’ve written it despite my hand currently being in agonising pain due to the current cold snap. I think it was something along the lines of, even though you sometimes feel like you’re in a sea of judgemental people who don’t understand why you need a seat on the train despite your apparent youth, there are people out there who completely understand and realise just how unfair this is.

    I’ll be thinking of you from now on.

    • Hayley, thank you so much for your comment. I appreciate it even more knowing how hard it is to write when you are in crippling pain. I too was fobbed off for so long, I changed GP five times until I found a locum who referred me to the first specialist. Luckily I know have a wonderful GP who is very understanding and helpful. I have so far been thought to have food poisoning, irritable bowl, food allergies, repetitive strain, carpal tunnel, nerve damage… I only got referred to a rheumatologist when one of the specialists I saw for nerve damage looked me straight in the eye and said, I don’t know what is wrong with you, you are a doctor (I have a PhD in Biochemistry) what do you think it is. Luckily I am so used to researching and fortunately had access to the university library that I researched my symptoms myself and asked to be referred to rheumatology. I am still frustrated that everything takes so long, 6 months for appointments, months for scans etc. Then each time I see a different doctor in the department, none of them can agree with each other, they dont communicate with my GP. I now have to take in records each time so that I can argue my case. Being ill is only half of it the rest is battling to get the help you need. I find the only way I can get through is to arm myself with knowledge, to correct doctors when they are wrong – this doesn’t not go down well I can tell you. But the can’t argue when I waft research articles under their nose. I shouldn’t have to do this but if I hadn’t I would still be sat at home thinking I had a sprain!

      What has kept me sane is talking to people in the same situation, we have an online group where we can share stories, give advice and generally have a moan without being judged. You are more than welcome to come and join us, just drop me an email. In fact please drop me an email, they are a great group of people!

      You know before I was ill, I probably felt the same in some way. It is so, so impossible to ever fully understand what any form of chronic pain is like until you suffer it yourself. It IS hard to understand how someone can be absolutely fine one day and unable to get out of bed the next. Thats why I added the radio MP3 below, he describes it beautifully. That you use all your energy and will to be ‘fine’ when you need to. You get through your day at work with sheer bloody mindedness and then when you get home, collapse and shut off. Ive lost friends since being ill because they don’t understand, but I have also learnd to value the ones that have supported me so much more.

      It is an awful situation to be in but I know there are so many people a lot worse than me, so I am grateful I can, with a bit of smoke and mirrors carry on almost as normal. Everyone with auto-immune disease become fantastic actors, we have to. The majority of people would never know I was ill unless I told them. But people are prejudiced. I have come to blows with people over it, mostly on public transport would you believe. Apparently the right to a seat is so precious to people they are willing to really fight for it. One time I asked a woman sat next to the window with a little suit case on the isle seat. I politely asked her if she could move the case so I could sit down. It would have easily fit on the floor between us both. She stood up to let me sit where she had been, but rather than sit down she put the case on the seat and huffed and puffed. Then she started moaning loudly to a random strange next to her about not being able to sit because ‘madam’ wanted a seat. Meaning me I presume because I was dressed up smartly having been in town for a meeting. I was in so much pain I had sat and had to crunch down pain killers as I didnt have a drink. As I passed her to get off obviously limping, I said loudly ‘rheumatoid arthritis, go look it up’!

      Im rambling on now so will stop LOL xx

  17. Oh Pearl it is heart breaking to read this. If can give you any hope I had a dreadful bout of psorisis and lost abyear of my life. I have been left with an isolated spot of psoriatic rheumatism in my back. I was really lucky with my consultant who then (many years ago) made me changed me diet drastically in order to help it heal and not cause other symptoms nor deplete my immune system. It worked, it was bloody hard work to stick to it and keep going as it was a long haul before it worked but it did.

    I’ve gone back to a more simplistic form of that very same diet now as recently my back was stiffening up and causing pain which once again when I stick rigidly to it helps.

    I had to cut out all sugar and minimise fruit intake, up my veg intake no fruit juices, no caffeine and no alcohol and not mix then carbs and protein but now carbs and fat . I use the Harcombe diet now before it was the Hay diet. It isn’t easy to do but it saved me – and you should claim disability allowance fuck idiots like Liddle and remember George Osbourne wasted ┬ú30k + of tax payers money on redecorating his flat!

    • Fuck Liddle indeed 😉
      My mum suffers horrendously with the skin psoriasis, has done since her teens. This is mainly why they think I may have psoriatic arthritis as my blood is awkward and test sero-negative which isn’t very helpful. Sorry to hear you suffered with it, it makes me so mad that people just think its a bout of a skin rash! I have been on two diets, first was an elimination diet as they thought when I first got ill it was food poisoning then a food allergy. Then after I had been referred to rheumatology I went on a similar one to what you mention cutting out ‘inflammatory’ foods. This diet has helped a lot, mostly with stomach problems as one of the meds messed my stomach up something chronic. From the elimination diet I had cut out and never gone back to dairy, milk and cream still make me vomit. But adding back in cottage cheese and live yoghurt has pretty much put my stomach right. I take 30 pills a day so its no wonder my stomach is messed up! I’ve fallen off the food wagon a few times but do stick to it the best I can and it does a lot of good. I will look up the Hay diet and see what it says, it sounds very similar.
      and fuck Osbourne too!
      I am sure sometimes that the politicians drip feed this drivel to these dim wit journalists to rally their own cause, funny how it coincides with Cameron’s bill to try and take away a lot of peoples benefits. My friend who has the same as me but much, much worse she can hardly leave the house, or get dressed. But she has been through two tribunals and has to go into be assessed every week – this is a woman who struggles to get out of bed, to ensure she is in fact still disabled. All for a measly ┬ú40 a week! It makes my blood boil. I have no idea how all these benefit fraudsters actually get away with it, as I know a lot of genuinely ill people who can’t get anything!
      Rant over xx

  18. He’s such an arse! It really pisses my off the way Cameron and everyone is going after the most vulnerable people, helped by the media.

    I keep forgetting that you have this condition, you seem so full of life via your blog! All th best to you and lots of hugs!

  19. I know two people who suffer with this, so do know what you are going through. It is just made worse because you are so young and should not have anything that restricts your life in any way, shape or form. Big hugs darling xxx

  20. I’m sorry Pearl. I’ve got a good friend who has fibro, and also celiac, and between the two she has quite a few not so good days. On the plus side she has been able to make it as a professor and to find coping strategies and remedies that help. I hope you have a good doctor that will work with you to make it easier.

  21. Loved reading this, and sadly I relate all to well to it all living with so many of the same conditions. Excellently written, and including that moron’s abhorrent utterings enables more people to be aware of what an excuse for a journailist he really is. Well Done, XXX

  22. Pearl–I am sorry to hear that things are going from bad to worse. My husband suffered for years from what sounded to me like fibromyalgia. We tried many things, experimenting with his diet, etc. He retired and began to read up on mineral supplements and now follows the advice of a veterinarian. He looks better and feels better than he has in years.

    • Its funny you should say that Terri as I have always found our Vet talk much more sense than any doctor! I do believe diet is very important and us more good / damage than we realise. I wonder why he never went for medical advise / diagnosis?

      – I do have to add just for the record for any one reading that degenerative medical conditions need medical attention and diagnosis, any significant changes made to your life style also need to be talked through with a doctor. I say this due to the fact that many nutritional / vitamin supplement advice can actually make auto immune diseases worse and have adverse effects on some medications.

  23. Pearl – this is heart rending and I feel incrediblly sad for you. But one thing shines through that I’ve loved and admired about you from the first time I met you and that’s your courage, your fight and your optimism. Fashion has been your saviour and may it continue to lead you through this battle.


  24. I’ve always thought Rod Liddle was a pathetic excuse for a human being, but this has just confirmed it without question.

    I’m so sorry to hear what you are going through. You’re so lovely, I can’t believe you have to deal with all this. xx

  25. The man’s an idiot. I’m a firm believer in karma and although I wouldn’t wish ill health on anyone a dose of something unpleasant might make Mr Liddle rethink his stupid words.

    My heart goes out to you, Pearl. As you know I battled with misdiagnosed pain for almost 30 years. Despite being told I had to undergo a major op, finally receiving the correct diagnosis was the best day of my life . Keep fighting and hounding your GP/NHS trust/consultant and if you need to claim benefit do so, you’ve paid into the State all your working life, it exists to help anyone in need despite what those bastards say.

  26. Pearl, somehow I had managed to miss your post last year. I’m so sorry to hear about your diagnosis – both of them. I’ve had arthritis since I was three. Back then it was virtually unheard of in children but I was lucky that the one specialist in the UK was at Birmingham Children’s Hospital -very near me. I’ve had years in remission but since I started driving last year my left knee has been agony. It is the consant dull ache which is so distracting. I can’t imagine what it must be like to have any more joints -mine is mainly constrained to my knees, ankles and elbows. Like you, wearing heels is a pain – and I get so sad when I look at all of my pretty heels – and the ones I can’t even buy.

    As for Liddle, there are always idiots who will make thoughtless comments. I just hope he never has to deal with any form of chronic illness as I’m not sure someone like him would bear it with as much grace as you 🙂

    Great post. Thank you for sharing your experiences – you’re making me wonder if I should do the same..

    Take care lovely, xxx

    • Emily Im so sorry to hear you suffer too. Right now there is a big campaign by the Arthritis Foundation to raise awareness for Juvenile Arthritis. When I first heard that even babies and little children can be affected it really broke my heart. Being in unbearable pain as an adult is bad enough but at least we can complain and demand painkillers I can’t even image horrendous this must feel to a child. It must also be utterly terrible for the parents to see their baby in agony.
      I have an all or nothing approach to heels now, I figure Im going to be in pain so I may as well look good doing it 😉 xx

      • Definitely with you on the heels thought. I just wear them for a at or two and then stick to flats for a week. Seems to work. Swimming really works for me. It helps to keep the joints moving without taking too much of a bashing.

        I know, I think my mum went through hell with it. But I guess from that age you have longer to get used to it and I don’t know adult life without it. I guess you have more to loose as an adult. My colleague was diagnosed with it in his early 30s and he’d always been so active – rock climbing, surfing, etc – and now nothing. xx

        • Yes, it is hard having to adapt your life around, even simple things like usually I walk a lot and now I have to think, if I walk to such a place what do I need to do at the other end and will I have enough energy left to do it? I take taxis so much now which I hate but it is better than not going anywhere at all. Whenever I am in London I love walking the entire length of Oxford St, always have. Last time I did it I could hardly stand by the time I got to the end, I could feel my hip bone grating against the socket. But I did it none the less, sometimes you just have to. I have waved bye-bye to Step Class for good though, that I can live with!

  27. I was sorry to hear that your health problems are mounting up, but glad that you are battling onwards and I hope that you find some medication bloody soon that helps you feel better. Ignore the doubters (yes Liddle I’m looking at you) and keep your optimism strong.

  28. This speaks a lot to me – in a slightly different way.
    Having had depression a few years ago and now having being diagnosed with anxiety disorder. I have good and bad days. The prejudice that mental health has is ridiculous – people would be surprised the people who have had depression. I got annoyed that people say its not a proper illness because to me it is.

    Thanks for writing this post and sharing everything with us.

    • It really makes me sad to think we live in a world of such little understanding towards our fellow humans, people are always looking to attack rather than show some compassion. Metal Health issues are of course just as serious as any other and can be so hard for sufferers. Sending you much love xx

  29. I am so sorry to hear about this second diagnosis. I will pray for you. Your an amazing girl keep your chin up, and keep reading and keep yourself educated on it you may find some things that will help you bear this burden and maybe even bring some relief. I always feel knowledge is power. ~Love Heather

  30. I never thought it wish for someone to share what ails me but if I could give a day of it to everyone who has implied that this is ‘all in my mind’ I would. I wish it was all in my mind – then I’d be able to get help with it.

    Bless you Pearl – it seems we’ve all got to hit bottom in order to swim back up. Take care honey.

  31. I have had chronic pain issues since 2001 so I understand how you feel. people should think before they speak. I was at uni on my way to a career in medicinal chemistry which is very lucrative – why would I swap that to stay at home so I could get benefits? Of course I wouldn’t but some morons thought that I would. I think they were jealous they couldn’t claim benefits for their impaired reasoning skills 😀 One of those people is my mother in law – who has retired and now lives of benefits – she could have kept working but thought it would be easier to get housing benefit. I never claimed benefits – I wasn’t entitled because I hadn’t paid national insurance when I was a student (I was a mature student and the 7 years before I paid NI didnt count) People knew that and it didn’t stop them judging me. I work now I have a job which works with my illness and with medication and regular cortisone injections into my hip joints and spinal column i do ok. I guess some people think I don’t really need them and I just fancy a day out to the hospital for excruciating pain 😀
    I hope you get your symptoms in control. I would never have believed I would be able to work and walk as well as i do now. I used to hobble a long with a stick! It took soooooo long to get some decent help but when they stopped trying to cure me and actually tried to manage my symptoms at the pain clinic things got a lot better. The pain clinic really gave me a lot of my life back.
    Sorry rambling now – if you ever need someone to vent to email me 😀
    here’s to more good days than bad

    • Thank you Stacie, I am glad to hear you are doing well now. As if being so ill isn’t hard enough then having to deal with ignorant people on top of it. A ‘friend’ actually said to me ‘you are so lucky getting to stay at home all day’ another ‘you must have so much spare time, how can you complain you dont have time to do xxxx’. It makes me wonder what do they thing we do all day, sit around and watch TV or play video games?? I spend my time either working or being sick, then working even harder to make up for the time I spent being sick! Sometimes I get to spend hours in A&E(ER) or waiting around hospitals to see doctors, having blood test after blood test, x-ray after x-ray. They never consider that some days you can’t even move out of bed, that you can sleep for 24 hours straight. That you can’t sit and watch TV when you feel like every bone in your body is being broken, or you have a migraine so bad you feel like you are going to die. Chronic illnesses snatch away our lives, no amount of benefits could make up for that. The only thing I can say is that at least people are standing up and trying to educate people. Thanks for sharing your story xx

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