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Living with chronic pain – the reality.

06 Jun

Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body.

The name fibromyalgia comes from three Latin words:

  • ‘fibro’ meaning fibrous tissues, such as tendons (tissue that connects muscles to bones) and ligaments (tissue that connects bones to bones)
  • ‘my’ meaning muscles
  • ‘algia’ meaning pain

However, the pain of fibromyalgia does not just affect the muscles, ligaments and tendons, but is felt all over the body. It results in widespread pain and extreme tiredness. People with fibromyalgia may also have:

- NHS Choices

I was diagnosed with fibromyalgia in 2006. Within a couple of years, I had gone from an active girl, going for eight-mile walks every day and swimming regularly, to someone who spent days in bed, taking a cocktail of painkillers and swapping my amazing shoe collection for a series of comfortable slip-ons and trainers. To someone who often couldn’t fasten their own bra or manage to sleep.

The problem with a fibromyalgia diagnosis is that, although it’s in the British Medical Journal and accepted as a viable diagnosis by medical professionals (after ruling out more serious conditions like MS), many people still refuse to accept that somebody can experience intense pain without an obvious, visible, medical cause. In people with fibro, the nerves overreact to pain and can’t distinguish between a small touch and a smack in the face, meaning that sometimes even placing your hand on their shoulder can cause the person intense pain, akin to the skin burning and muscles tearing.

Fibromyalgia is usually diagnosed by testing the patient for certain ‘pressure points’ around the body. These points are extremely tender, and touching them lightly causes pain in that area. However, the pain of fibro isn’t limited to those specific points; it’s just a diagnostic tool rheumatologists use.

My own diagnosis consisted of a long talk with Dr. B – the consultant who also diagnosed me with osteoarthritis a couple of months ago – about my mental health problems. At the time, I didn’t see how it was relevant; my pain was physical. I now realise that he was trying to rule out pains caused by depression; a common symptom.

Dr. B poked me in the back and thighs with his fingers, asking if it hurt. Every time it did I squeaked and shot across the room. We spoke about my history of gastric problems and the tiredness I’d been unable to shake since my teens. The lack of sleep and never feeling awake. The regular blinding headaches and the pains in my jaw and neck which sometimes hurt more than I could cope with. Written down, it doesn’t seem so bad; everyone gets tired, everyone has headaches. Everyone goes through periods of bad sleep. Strange pains with no explanation probably affect everyone at times. However, when you’re always tired, always in pain, always running to the toilet and laying wide awake for days at a time… fibromyalgia is relentless. You can improve at times, but it comes back. Fibro-flares can last a day or a year, and the gaps in between aren’t exactly a relief; the pain just lessens a bit. Everything’s still hurting.

Tiredness as a symptom is often looked down on by the layperson. It sounds quite flimsy; an easy excuse for being lazy. However, I have been tired for years. Unless you have a chronic condition which affects your sleep, you just can’t understand how constant fatigue can destroy a person. Suicide isn’t uncommon.

Society as a whole seems to view chronic pain with suspicion. Even in cases of serious – even terminal – conditions like MS. Pain doesn’t seem to be a good enough excuse for claiming disability or having a carer. Unless you’re in a wheelchair, you may as well be making everything up.

Having your symptoms played down (“it can’t be that bad”) or denied entirely (“I heard from my friend’s uncle’s cousin that fibromyalgia/arthritis can be cured by a juice diet”) wears you down. When you live with chronic pain of any sort, you learn very quickly what you can and can’t do, and what will or won’t help. You become an expert on the subject, and while advice may be well-meant, it really doesn’t help. Telling somebody they’ll ‘get over it’ is useless when most of these conditions are life-long or can last for years.

In my comments on my post about privacy I mentioned the attitudes of members of a forum I used to post on. I never hid the fact that I was classed as unfit to work; disabled, in the medical sense. I was open and honest about the benefits I received – I’m on DLA and incapacity – although I rarely mentioned fibromyalgia unless somebody else brought it up; I didn’t want to be defined by any conditions I have. I’d already had abuse thown at me when I admitted to suffering from depression, and I knew I couldn’t take insults and accusations from strangers when I was already struggling to accept my position in society.

When you can’t work, you feel useless. The issue of employment and benefits is a hot topic in the UK right now, and most newspapers seem to revel in accusing everyone without a job of being a scrounger. The unemployed and the unemployable are lumped together with no leeway for disability, no allowance for redundancy or personal issues. I try to avoid the news precisely because of this attitude, but it’s difficult to miss when huge headlines scream out from paper stands with a photograph of a man with a supposed bad back who’s been living  a secret life as a judo instructor while claiming disability benefits. These cheats are in the minority, but society sees these photos and assumes everyone with a bad back is jumping out of aeroplanes and partying.

I’d like to credit humankind with more intelligence and free-thought, but I can’t help wondering if the majority looks at individuals like me and judges me for not having a career. When so much of what a person does is related to what they do for a living, it can be hard admitting that not only do you not have a job, but you perhaps never will. Taxi drivers often assume I’ve been at work or am on a day off; I used to try to explain, but the majority stopped speaking when they learned I didn’t have a job of my own. Now, I just say “yeah, long day” and leave it at that, or say I’m jobseeking. I shouldn’t have to explain my situation to total strangers, yet it happens all too often. I’ve stopped chatting to others in the street because they inevitably ask what I ‘do’; somehow, I don’t think they’d appreciate me replying with, “lie in bed feeling sorry for myself, mostly”.

For the past year, I’ve been pretty much bed-bound during the week. Since starting on Lyrica, I’ve been able to sit up and move around the house more easily, but it’s sometimes still difficult to make it down the stairs when my legs feel like they’ve fallen off. Pins and needles is common; my right side often goes totally numb. You just can’t walk on a dead leg, as much as you want to.

My hands still tremble, although they’ve improved slightly due to medication. Dropping cups and bottles of milk is common, as is walking into stationary objects when my legs decide to go the opposite way without permission. My knees often lock while I’m walking down stairs, and I’ve fallen over more times than I’d care to remember over the past few months. I’ve damaged my elbow, twisted my ankles, banged my head and bent my fingers back. I pull doors into my own face because I can’t judge distance due to being distracted by the pain.

I can’t cross roads without help; I rarely go out on my own now because I can’t cope with struggling across a busy street into the path of incoming traffic. I can’t know if my knees are going to give in half way across. I find that using a walking stick (black, with coloured flowers) helps with crowds – people tend to move if you’re obviously struggling – but I still get jostled and pushed. Maybe it’s my age; you don’t see many 20-something’s walking around with a stick in this town. Especially not ones with 36 piercings and visible tattoos and bright hair. I occasionally wonder if I’m being assessed by strangers because I obviously cope with the pain of piercing needles but not with burning sensations running through my arms and shoulders.

I don’t cope. It hurts like hell, but it’s a pain I can control. When your body betrays you, you need to hold onto something you have power over. When the needle goes into my body, I choose where and when. I choose how much pain I’m likely to feel. Fibromyalgia and arthritis don’t give you that choice.

There seems to be an assumption that life on benefits is taking the easy option. I frequently hear tales of 40″ HD tv’s and cars galore; where do they think that amount of money comes from? From DLA and incapacity, I’m ‘earning’ close to minimum wage. My television (20″, not HD) was a gift from my parents. My iPod was a Christmas present. S bought my PS3. I don’t have a car – I can’t drive, what with being disabled – and holidays are rare. The only time I’ve been abroad is to Germany on a school trip.

I  lived with my mother for so long after splitting with J because I couldn’t afford to rent on my own; with S, we can split the cost. I still pay my mother rent; it’s not free.

I will never own a house unless I inherit one or come into money through the lottery. I have no credit rating, and will never be allowed a mortgage as long as I’m ill. I don’t get handouts; I get help towards extra costs my disability causes. Costs such as handfuls of medication – I don’t get free prescriptions or a reduction – and taxis because I can’t always walk to the bus stop. Aids like walking sticks and adapted kitchen  equipment so I can open jars and unscrew lids. Clothes without fiddly buttons and shoes with extra support. Costs for travel to hospital appointments; I often have to get a taxi 20 miles or more first thing in the morning to see specialists, which can cost over £50 there and back.

Although the people closest to me show understanding, strangers are often callous and cutting with their remarks.

You’re what’s wrong with society” – like I asked for this.

You go to the pub, so you can work” – On Fridays, I meet S at a pub near the hospital. He likes to drink a few pints at the end of the week after working in the lab for very little money or respect. Before Lyrica, I’d have a couple of pints with him; is that so wrong? I’ve spent the week being in pain, do I not deserve a chill-out with my boyfriend? Are the disabled not allowed to drink? I sit down, I don’t dance or do gymnastics.

Pothead/druggie/addict” – I understand that some people are very anti-drugs, and have a preconception of those who take them. Those who smoke weed are seen as lazy drop-outs. Yet those who judge often have no problem with legal drugs such as paracetamol or codeine. Cannabis is a proven painkiller; the studies have been done, and I’m living proof that smoking a joint can calm muscle spasms and make everyday tasks easier. I’ve had addictions to painkillers – codeine, tramadol and morphine – and I feel far more stable and healthy for swapping those for cannabis. Codeine damaged my liver, tramadol damaged my mind, and morphine destroyed my whole life. Cannabis has brought me out of myself, soothed pain and calmed my panic attacks; so why is it so bad that I choose to smoke it? It’s my choice, and I could easily push my liver too far and die if I took all the painkillers I’d need to dull the pain. Instead, I just continue damaging my lungs -  I smoke anyway – and accept it as a side-effect of treatment. All medications have negative side-effects. I was taking 40 co-codamol pills a day; how can that  be better just because it’s legal?

You look fine” – well, thanks I suppose. That’s because I cover my face in trowelled-on foundation and bronzing powder to hide the grey pallor of my skin. I make myself look as presentable as possible because what 20-something wants to look like a stooped lump of sweaty, pained lard? I style my hair because it looks nice when I do. There seems to be a belief that the disabled can’t possibly look healthy. We fake it, very well.

Chronic pain isn’t fun and it doesn’t make you rich. It’s not an excuse to avoid work. I would kill to have a job. As a child, I had dreams of growing up, having a career and being independent. I wanted to be a paleontologist or a secretary and day-dreamed about my office and taking money home. Life holds no guarantees though and, through no fault of my own, I ended up with arthritis and fibro, along with mental illness. I wouldn’t expect to ace a job interview anyway; what business will allow weeks off with no notice? Who would help me get out of chairs since I can’t stand for more than a few minutes? I’d need time off for tests and appointments, someone would have to help with lifting things. It’s just not practical and I’d cost the business money. I’d be a liability.

Some people do abuse the welfare system. I’m not in denial of that. However, far more receive it for genuine reasons and without it life wouldn’t be worth living. Without it, there’d be no medications. No rent. No food. No clothes. No quality of life at all.

Some seem to think that’s what we deserve for daring to be unwell.

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75 Comments

Posted by on June 6, 2012 in Every day life

 

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75 responses to “Living with chronic pain – the reality.

  1. prideinmadness

    June 6, 2012 at 5:56 pm

    I knew two people who had fibromyalgia, my neighbour and my hairdresser. When I was younger I didn’t understand why my neighbour was allowed to use the handicap parking. The permit to do so has a picture of a wheelchair on it and she wasn’t in a wheelchair so I was confused. As I grew older and met my hairdresser he explained fibromyalgia to me and he eventually had to leave work because of the pain he experienced.

    Thank you for sharing this!

     
    • halfwaybetweenthegutter

      June 6, 2012 at 6:48 pm

      And than you for reading! I think it’s natural to assume disability is always obvious, but there’s enough information out there now that there’s few excuses for ignorance. Like you a lot of people find out about it from chatting to others; I’d certainly never heard of fibro before I started researching it for myself.

      I trained to be a hairdresser, but had to finish my course because of the pain. It’s not great trying to juggle scissors when your hands have a life of their own!

       
      • prideinmadness

        June 6, 2012 at 7:21 pm

        Yeah I can imagine hairdressing would be difficult! It’s interesting that I was oblivious to “invisible disability” when I technically have one myself!

        I agree that there is enough information out there that we can’t plead ignorance anymore.

         
        • halfwaybetweenthegutter

          June 7, 2012 at 10:43 am

          I don’t even know why I chose hairdressing, it was a horrible bitchy career! When I was younger, I didn’t understand why my mother was always in pain; she has no physical signs. I was cruel sometimes. It’s only when I ended up in chronic pain myself (and all the lovely things which come along with it) that I finally ‘got it’.

          The thing with fibro is it’s a sort of desperate diagnosis. Doctors KNOW there’s something wrong, they admit that the pain and other symptoms have to be caused by something, but other than the knowledge that the nerves don’t carry pain properly, it’s a bit of a dark horse. It’s been known of for a long time – most doctors seem to agree it’s what used to be called rheumatism – but because you can’t just cut somebody’s brain up while they’re still alive, there’s no way of seeing exactly why the nerves are acting in that way, or why it also leads to stomach problems and mental symptoms. There have been tests done in spinal fluid which does show a difference in people with fibro, but obviously you can’t test everybody; it’s a painful, expensive procedure with risks.

           
          • prideinmadness

            June 7, 2012 at 3:28 pm

            So your mother has the same as you or another type of chronic pain? I get worried sometimes that I’ll have chronic back pain like my mother did for years but I think that might have been from a car accident she was in.

            It must be frustrating to not have solid answers. I felt that way with my mental health diagnosis. “We don’t know why but this is what we think is happening”….ok thanks…..

            So its basically about pain management I’m assuming. That’s what my neighbour has to do. She has good days and bad days. That’s when it’s good to have a good support around you to help get things done.

            Can fibro ever go away?

             
            • halfwaybetweenthegutter

              June 7, 2012 at 6:00 pm

              She does yes; severe osteoarthritis and muscle problems. Both my sisters and I have had joint issues, so I think the osteo is very much genetic in our family; we all showed signs at the same age. I wouldn’t worry too much about taking after your mother if there’s other reasons why she could have had back pain – worrying doesn’t help :) I know how easy it is to wonder though.

              It is pretty much about pain management; there’s no cure for either fibro or arthritis, so it’s all about keeping the pain at a level you can cope with. There’s a lot of division over whether fibro can go away; a lot of people claim it can, but doctors have never been able to prove it, and most people I’ve since met with it certainly haven’t magically got better. I think it can improve, and hopefully the future will hold hope for treatments like Lyrica being more easily available and cheaper.

               
              • prideinmadness

                June 7, 2012 at 6:05 pm

                Yeah cost can be a huge issue! This isn’t human related but my oldest cat has arthritis and changing her diet has done wonders for her! She went form not walking to running and jumping again! It was exciting to see!

                 
                • halfwaybetweenthegutter

                  June 7, 2012 at 6:27 pm

                  Oh, bless her! I always get upset when I see animals with arthritis; humans can understand but animals don’t know why they’re in pain :(

                  I have tried changing my diet, to see if it helps. No change so far (lots of fibre, iron, essential nutrients and general good stuff) but I’ve not been very strict with myself. It’s all too easy to just turn to chips when you’re a veggie!

                   
                  • prideinmadness

                    June 7, 2012 at 7:08 pm

                    It’s the Omega that did it for my cat and it helps humans also!

                    It’s hard to follow a diet. I try and get lazy.

                     
  2. rachelmiller1511

    June 6, 2012 at 6:09 pm

    Although, very luckily, I don’t live with this chronic pain, I really relate to what you have said about benefits in the UK. I hate that I have felt like a scrounger in the past- but I think I just let the press and other people’s judgements get to me. Not reading papers is probably a good way to go. I felt ashamed being on benefits which I know is ridiculous as I was in no way scrounging, but it was a tough feeling to shake. The media seem to forget there are people out there who truly need it and really can’t work for a living at the present time.

     
    • halfwaybetweenthegutter

      June 6, 2012 at 6:44 pm

      “The media seem to forget there are people out there who truly need it and really can’t work for a living at the present time.”

      Wholeheartedly agree. Having a job would make me so happy; I’m not avoiding it on purpose. I want to be valuable to society, you know?

       
  3. The Quiet Borderline

    June 6, 2012 at 6:12 pm

    Thank you for the informative post. I’ve learned a lot.

     
  4. April

    June 6, 2012 at 6:30 pm

    Oh hun, I feel for you. My mother had fibro. I can remember her from when I was very young, and she was healthy. She was a different woman. I hope you find a balance that works for you.

     
    • halfwaybetweenthegutter

      June 6, 2012 at 6:36 pm

      Thanks April; my mother also has chronic pain and I can remember her working and running around after us kids. She can’t even leave the house most days now.

       
  5. Ginger Ray

    June 6, 2012 at 7:02 pm

    I have severe fibro as well with osteoarthritis. I did have a career for 28 years, but had to quit after becoming so ill. EVERYONE asks (what do you do) and I understand how you feel. I receive social security disability, but was denied for disability from my work place because the insurance company thought that fibromyalgia wasn’t real because I couldn’t give them an x-ray or blood test proving it. So our family struggles with the money issue as well. I would rather be working than having constant pain, fatigue, fibro fog, falling, trouble with joints working properly (like knees locking), etc, etc. Bless you on sharing your heart. Hang in there!

     
    • halfwaybetweenthegutter

      June 7, 2012 at 10:38 am

      Thanks so much for your comment Ginger Ray! I totally agree with what you say about working; I’d love a job, I really would. I dream of having a job! And it’s not like I haven’t tried; I’ve volunteered in charity shops and for the RSPB, but all have had to end because of the fibro. With my first voluntary job I held on much long than I should have, just to prove I could do it. I couldn’t, and I ended up just making things worse. Nobody should have to feel forced into proving themselves.

      I’m lucky that I live in the UK; although there’s the attitude of “just get over it” by a lot of people, there’s a safety net in DLA if you can get it (disability living allowance). My DLA is almost entirely for mental illness, because fibro’s a bit of an iffy area at the moment. However, now that it’s in the British Medical Journal as a real, diagnosable illness with approved treatments… hopefully that’ll change. It’s a massive positive step forwards.

      I’m sorry about your insurance. Again, I’m lucky. And you hang in there too!

       
  6. Catriona

    June 6, 2012 at 7:42 pm

    Thank you for a brilliant post. I don’t know anyone with fibro, but in many ways it must be similar to having a mental health issue in that it’s not seen as being “properly ill” and you should be able to pull yourself out of it.

    I get chronic fatigue as well. It started when I first gave birth and I’ve rarely had a solid night’s sleep. I got so used to sleeping with one ear open than I now wake up at the slightest noise. Think mothers of new borns and soldiers both have the ability to sleep in any position at a moment’s notice.

    As for the current witch-hunt on people claiming DLA, it’s an appalling failure of today’s society to show consideration to those worse off than themselves. As a single mother I only came off Income Support recently and I felt guilty for being on that for so long even though I was looking after 4 children which shouldn’t be regarded as equal to lying on the sofa all day. But it is soul-destroying hearing people who know nothing about you making you feel you haven’t the right to be ill.

    You’ve captured the frustration beautifully and I do really admire your struggle and your ability to put it all into words so well done you, and carry on.

    Cat

     
    • halfwaybetweenthegutter

      June 7, 2012 at 11:38 am

      It’s very similar to having a mental health issue; almost the same, really. I’m (in a strange way) glad I also have osteoarthritis because it’s a very real, obvious thing… but because I’m in the early stages in my fingers, it’s still not obviously physical. I have some bending and twisting of my fingers and toes and a lump on one of my fingers, but it’s still not immedietly obvious. I wish it was; I actually wish my fingers would hurry up and become like an old lady’s, so I can show people I’m not making it up.

      It’ll happen. Maybe I’ll get more respect then.

      Chronic fatigue is so difficult to explain unless you’ve experienced it. Sometimes I wish everybody could, just so they knew it’s not an excuse, that it’s painful and horrible. Enough ‘healthy’ people complain if they lose sleep… imagine living with that all the time. It’s something you never get used to. The body just isn’t supposed to always be tired.

      “As for the current witch-hunt on people claiming DLA, it’s an appalling failure of today’s society to show consideration to those worse off than themselves.”

      Amen to that. Nobody should be made to suffer even more when they’re dealing with a situation beyond their control. Looking after 4 children is harder than any job – I’m not a parent, and even I know that! – and why so many people can’t see that, I don’t know. The mind boggles. As you say, it’s not like you’re sitting on the sofa having the time of your life.

      Thanks so much for the comment Cat <3

       
  7. Resilient Heart

    June 6, 2012 at 7:51 pm

    What a beautiful post illustrating the world of those living with invisible disabilities. Although I do not have Fibromyalgia, I do relate to so many things you have shared. The endless days in bed, not being able to work and feeling useless, no longer explaining myself ad nauseum, not going out much, etc.

    Disability is not for the faint of heart! (At least for the honest people) There are people who will cheat the system but why do they feel compelled to punish the ones who are simply trying to just get through the day. It is demoralizing, unbelievably inhumane, embarrassing, and humiliating. No one in their right mind would sign up for this kind of life. No one can fathom the suffering unless they’ve been there.

    May you find comfort in knowing you’re not alone, relief for having ventilated the hurt, healing and strength from kindred spirits.

     
    • halfwaybetweenthegutter

      June 7, 2012 at 11:46 am

      “There are people who will cheat the system but why do they feel compelled to punish the ones who are simply trying to just get through the day. It is demoralizing, unbelievably inhumane, embarrassing, and humiliating. No one in their right mind would sign up for this kind of life.”

      Not long ago, I tried to explain how the prejudice feels by comparing it to waaaay back when we used to have to fight to be the strongest in the tribe to survive. How the weaker ones were left behind because it damaged chances of survival. I almost think society as a whole holds onto these beliefs subconsciously, kicking the weaker humans out. That doesn’t need to happen anymore. It should never happen anymore; we’re supposed to have progressed and evolved as human beings.

      I don’t understand where this belief comes from that this sort of life is enjoyable. I have good things in my life – I’ll never deny those – but each day is a struggle, and it’s humiliating to have to explain myself constantly. In an ideal world, nobody would question it.

      Thanks much <3

       
      • Resilient Heart

        June 9, 2012 at 10:40 pm

        Oh gosh, your tribe illustration reminds me of watching Tom Shadyac’s documentary, “I AM.” He showed how tribes used to take care of the sick and elderly until one hunter’s knickers got up in a bunch (my paraphrase, LOL, not his) and chose to hunt only for his family. One after another the same thing happened and the support of the ‘weaker’ members of the tribe totally collapsed upon them.

        I think as long as people follow the denial and lie that life in our shoes can be difficult, those people don’t have to change. But, I find it important to keep telling our stories and add to the collective voices worldwide. We’re a part of something greater, all of us. Thanks for being here! :)

         
        • halfwaybetweenthegutter

          June 12, 2012 at 12:32 pm

          “I think as long as people follow the denial and lie that life in our shoes can be difficult, those people don’t have to change. But, I find it important to keep telling our stories and add to the collective voices worldwide. We’re a part of something greater, all of us. Thanks for being here!”

          Thank YOU! Without anybody to read it, there’s no point in writing it. Too many people are in denial, and it baffles me; why would I fake an illness which I’m clearly hating every moment of?!

           
          • Resilient Heart

            June 12, 2012 at 10:16 pm

            TOTALLY! Oh yes, I ‘fake’ being injured because it’s so flipping fun to have relationships fall apart, my family disown me, be in dire financial need, face homelessness, live with pain every single day…oh the list goes on and on.

            The most unfortunate thing is those who judge us (and, when we judge others) we all miss out on the opportunity for growth. It’s really a shame our world is of the ‘haves’ and the ‘have nots.’

            My FAVORITE thing in kindergarten was ‘show and tell’ because I LOVED learning about others. I was so sad when I went into elementary school and that was no longer a part of our education. We can do better than this.

             
  8. SummerSolsticeGirl

    June 6, 2012 at 7:52 pm

    “Some people do abuse the welfare system. I’m not in denial of that. However, far more receive it for genuine reasons and without it life wouldn’t be worth living. Without it, there’d be no medications. No rent. No food. No clothes. No quality of life at all.

    Some seem to think that’s what we deserve for daring to be unwell.”

    Le sigh.

    I could say so many things…

    Here in Canada is also very difficult -almost virtually impossible, to get disability assistance for Fibromyalgia/Chronic Fatigue Syndrome.

    I am SO lucky (believe me, I am incredibly lucky. Blessed in you believe in that kind of thing) I finally found a job I can do from home, where I make my own hours and that allows me to live with dignity.

    I couldn’t find ONE single doctor who was willing to support my case for the disability board.

    So, all I can say is I hear ya. I hope one day soon, you can also find yourself in a financially healthy situation so you can be the person you are meant to be

     
    • halfwaybetweenthegutter

      June 7, 2012 at 11:52 am

      *hugs*, and le sigh right back. It’s so frustrating. Getting DLA on fibromyalgia alone (or CFS) is almost impossible in the UK too. It’s a weird world where I count myself lucky that I have other health problems which allow me to claim disability; why on earth should that have to be a good thing?! Even if I just had fibro and not mental illness or arthritis, I don’t see how I’d be able to hold down a job. It wouldn’t be fair on me, or the business.

      Well done for finding a job from home; I also hope to manage this in the future. Right now I can’t even commit to that, but I have hope that perhaps Lyrica will make it possible one day. What do you do? Dignity is such an important thing, and I’m glad you’ve found it :)

      My own personal blessing is having an amazing doctor, and an even more amazing consultant (one of the top in the UK) dealing with me. I don’t know how I got so lucky, but I’m not going to question it; it gives me security knowing medicine is on my side. I hear so many stories of doctors refusing to support cases, which is terrible. I suppose doctors are only human, and despite education and experience, some still carry their own prejudices and judgements.

       
      • SummerSolsticeGirl

        June 8, 2012 at 5:12 am

        I work as an online community manager for a dance school. 90% of my job is online and can be done from wherever I have an internet connection so it’s pretty awesome.

        On nice days I can go outside and from from wherever I can pick up wi fi or even tether from my iPhone. I love it.

        If I’m feeling too tired or I’m in too much pain, I can always take a nap and then go back to work :)

        And yes, you are right about some doctors still carrying prejudices and judgements. I should never happen but unfortunately it does

         
        • halfwaybetweenthegutter

          June 12, 2012 at 4:39 pm

          Ah, this is why I need a smartphone! I have one, but it’s rubbish. I’d love to be able to sit in the garden and mess about online. My laptop screen is too glossy and the battery doesn’t last long enough.

          It sounds like a great job; well worth me thinking about!

           
          • SummerSolsticeGirl

            June 12, 2012 at 5:49 pm

            Ah yes, smartphones are awesome. Dunno what i’d do without mine.

            And definitely think about it. Large companies will require their community managers to be on site but small businesses are more flexible.

            Best of luck

             
  9. Resilient Heart

    June 6, 2012 at 7:54 pm

    I forgot to mention what a disabled friend told me once regarding ‘not working.’

    She said, “Taking care of yourself IS your full-time job.” She’s a strong woman who I look up to for building herself a good life no matter what. I hope these words encourage and validate you in the same manner.

     
  10. jhon baker

    June 6, 2012 at 8:04 pm

    I’ve worked long and hard to show as little pain on my face as possible and often get side glances for my parking placard and a hard time at the pharmacy. As where I have a medical cause for my chronic pain I am deeply sympathetic toward those with fibromyalgia. None of us asked for this and society should take a pill in reference to it and mental aberrations such as we suffer. I don’t often get people that are willing to say things to me as I am a large man and look rather menacing to the uninformed, I am glad of that. As for the stigma of and living with true pain – you nailed it.

     
    • halfwaybetweenthegutter

      June 7, 2012 at 11:56 am

      “I’ve worked long and hard to show as little pain on my face as possible”

      Yup. I know I’m not alone when it comes to hiding the pain; who wants to show the world they feel awful? I think most of us hide it like experts, and it’s unfair that people then assume we’re absolutely fine. Those who smile through cancer are called brave. Those who smile through chronic illness are called lazy. It makes no sense.

      I hear you about people maybe keeping a little quieter because of how you look. I rarely get comments in real life because I look a little scary with my piercings and tattoos and pain-scowl, and it’s a relief in a way. Online… it’s a totally different story.

       
  11. notsofancynancy

    June 6, 2012 at 8:19 pm

    As a fellow fibroite I applaud your post. May others read it and realize how much we have lost.

     
  12. Katie Michele

    June 6, 2012 at 8:32 pm

    This is perfectly written in my point of view. I’ve suffered from chronic pain since 13 (6 years), and have dealt with all of the issues you speak of above. I have a connective tissue disorder which was the base cause of my pain, but over the years I also developed fibro, mostly because the body isn’t meant to be in pain 24/7 and when it is your nerves no longer know how to respond and are always on high alert. Being on disability is hard and I feel ashamed of it – which is ridiculous because I can honestly say that by just making it through the day I’ve worked harder and suffered more than any job would cause me to.There’s such a stigma surrounding chronic pain, and like a doctor I once was lucky enough to meet said; “what a cruel thing to do to someone who’s already suffering so much”. In the country I live (Canada) veterinarians receive 5 times more training in pain management than people doctors and 3 times more than people nurses. That’s insane! No wonder it’s so hard to get proper pain management! I’ve learned to try my hardest to pretend not to be in pain, but if you look, actually look into my eyes, you can see that I’m hurting everywhere, and badly. But most people just look at you and see a young woman, with no visible disabilities and assume you’re either faking or exaggerating. My life did get a bit easier once I could say “I have Marfan Syndrome”, I was finally able to give a name to the cause of the pain, but still so little people can or even try to understand what it’s like to live in pain. Cruel judgement seems to far more often than not win out over compassion.

    Anyways, sorry for rambling. You did a fantastic job writing this post, it’s as if the words came out of my own mouth. Thanks, it’s nice to be reminded that I’m not alone, even though I wish no one else had to suffer with chronic pain. We take it day by day, or more like hour by hour, that’s all we can do, sometimes it seems like such a long, long road ahead.

    I wish you the best <3

     
    • halfwaybetweenthegutter

      June 7, 2012 at 12:54 pm

      “Being on disability is hard and I feel ashamed of it – which is ridiculous because I can honestly say that by just making it through the day I’ve worked harder and suffered more than any job would cause me to.There’s such a stigma surrounding chronic pain, and like a doctor I once was lucky enough to meet said; “what a cruel thing to do to someone who’s already suffering so much”.”

      Oh luv *hugs* I understand the shame. I agree it’s ridiculous, but it’s so hard not to feel ashamed when you’re being told it’s not even real. That doctor sounds amazing; much like my Dr. B. One good doctor can make the world of difference, even if they’re just offering kind words. Sometimes kind words are all we need.

      “In the country I live (Canada) veterinarians receive 5 times more training in pain management than people doctors and 3 times more than people nurses. That’s insane!”

      What?! That’s ridiculous! I love animals and all but… there’s not even equality! I have no idea how much goes into pain management here in the UK but I assume it’s not a lot. I know it’s far better to go private in most cases; I suppose the NHS can’t afford to keep pain specialists.

      “I’ve learned to try my hardest to pretend not to be in pain, but if you look, actually look into my eyes, you can see that I’m hurting everywhere, and badly. But most people just look at you and see a young woman, with no visible disabilities and assume you’re either faking or exaggerating. My life did get a bit easier once I could say “I have Marfan Syndrome”, I was finally able to give a name to the cause of the pain, but still so little people can or even try to understand what it’s like to live in pain. Cruel judgement seems to far more often than not win out over compassion.”

      Yep, the eyes can’t hide it. I think those who judge just ignore the eyes and focus on the fact that you styled your hair or are wearing nice shoes; as if wearing nice shoes means you’re not in pain. It baffles me, it really does. There’s no reason at all to fake these conditions – DLA isn’t a lot of money, it’s not a ticket to riches – yet, as you say, they see a young woman with nothing obviously wrong and so believe we’re just making it up for a laugh. I can much relate to that relief of having a name for the pain; being able to say “I have arthritis” holds much more weight. It’s just a shame we have to explain ourselves.

      Thank you so much for reading, and for your wonderful comment <3

       
  13. modifiedgirl

    June 6, 2012 at 9:11 pm

    I could have written this post myself, twice over. Well, perhaps if my insurance company would cover Lyrica, or my husband weren’t so against my trying medicinal marijuana , and one or the other helped with my fibro fog long enough to organize my thoughts this well.
    I too, for far too long, have dealt with the looks, the not-so-quiet-whispers, the sneers, and stares from members of the community. From Drs and Nurses who make the occasional snide comment of “how can I be so bothered by pain when I am covered with so many huge tattoos?”
    Just yesterday while attending a counseling appointment with a new provider for my teenage son, who is 14 and showing the signs of depression and anxiety , I looked like hell. I was my usual pale shade of grey, I had barely slept in days…..but was quickly approaching my need to cocoon in bed for a week, I’m dealing with an abscess in my mouth which has left my glands swollen in my neck and my face puffy, and everything about my appearance was generally dull and lifeless. With the exception of my hot fuschia hair, various piercings, and colorful tattoos. My sons counselor took one look at me and said “Are there any drug or alcohol problems in the home?” Standard enough question , right? I answered a firm “No, Absolutely Not.” To which he looked down his nose at me and asked again “How about you, drugs….alcohol…How long you been stable?”
    Once again, I repeated, “I’m neither a druggie nor a drunk, I am a chronic pain sufferer and I Only take what is prescribed to me, no more, most times less, period.”
    The stigma and the B.S. we have to put up with on a daily basis due to our conditions is sometimes almost as bad as the mental anguish our pain puts us through just to get by.

     
    • modifiedgirl

      June 6, 2012 at 9:22 pm

      I forgot to list, I have Fibromyalgia, Severe Depresession, Chronic Pain, Sacroiliac Joint Disorder, Degenerative Disc Disorder which has all but obliterated 4 discs in my lower back, Chrinic Fatigue Syndrome , and in the last ten years I have lost both my breasts and all of my reproductive organs to Cancer. Yet, the United States government still thinks I am capable of holding down a full time job and will not approve me for SSI/SSD.

       
      • I'm taking a nap

        June 7, 2012 at 1:16 am

        Holy crap woman, did you have a lawyer?!?! I know they take a chunk of the money but you DEFINITELY fit the requirements of disability!

         
        • modifiedgirl

          June 7, 2012 at 2:54 am

          Currently on lawyer number 3……they can have it all at this point! (7 years and counting!)It’s become a matter of principle!

           
          • I'm taking a nap

            June 7, 2012 at 3:36 am

            I know huh. It took me five years and two appeals to get mine. My therapist told them that there was no way I could hold down a job and there was no hope of my condition getting better. I swear it’s harder to get the money you deserve than it is to get the doctors to diagnose the damned diseases in the first place.
            My hubby is legally blind and he got his almost automatically. Then again, I have a friend from way back that lost both her hands in an industrial accident and she’s still fighting to get hers, after ten years.

             
            • halfwaybetweenthegutter

              June 7, 2012 at 1:00 pm

              “I swear it’s harder to get the money you deserve than it is to get the doctors to diagnose the damned diseases in the first place.”

              This is what makes me sad. So many people struggle to get a diagnois, then when they finally do they’re still struggling to be taken seriously. The case of your friend is ridiculous; I’ve heard so many stories like hers and it always astounds me that the supposed welfare sytem often refuses to help those most in need. They almost seem to pick and choose who they want to have help.

              I was lucky; I was given DLA very young because of constant physical illness and severe mental illness (I’ve been in psychiatric hospitals four times, all under the age of 18) and it wasn’t an issue at the time. I count my blessings that I’ve never had to fight; although I have no doubt I’ll have to in the future.

               
  14. Roxy

    June 6, 2012 at 10:42 pm

    Totally sympathise with your post. The tiredness for me is the worst, and never feeling awake. It’s absolutely horrible, and being so tired yet you still cannot sleep. I hate it.
    My tremors in my legs make doing stuff some days unbearable.
    As much as I agree with how utterly irritating it is when people say, well if you do x,y,z you’ll be better, I have to tell you that although I still have pain, tremors, and insomnia, I am better able to symptom manage doing this meal plan for recovery.
    There were times I just couldn’t even contemplate eating because my whole body felt too exhausted to even digest it. I struggle and eat regardless now, and in the past few weeks, I’ve been outside more than I have in the past six years, since diagnosis of fibro and CFS.
    Its not a miracle cure, I’m still tired all the time, reliant on meds sometimes, and I’m still an insomniac, I’ve had about 5 hours sleep since Sunday, but I feel slightly more alive. Anyway I’m only sharing it because, I, like you, was housebound for years, and bed bound most days. I still can’t do what normal people do without paying for it, but I can do more.
    Basically I have to eat six small meals a day (nothing is banned but I don’t eat a lot of sugar, this can make fibro/CFS worse), and eat a lot of wholegrain starches, which is difficult, I won’t lie, my tummy seems to react worst to starches, but it does work when you find the right ones.
    I’m sorry if you find my comment, “oh we’ll, you should be doing this” because it isn’t at all. I just hate to see other people go through this agony because it’s horrible. Hugs lovely. X

     
  15. Dottie Smith

    June 6, 2012 at 10:46 pm

    While I don’t have Fibromyalgia (and feel decidedly awful about myself for even saying anything after reading this post – I have severe IBS and always feel ashamed of saying it) I understand the unrelenting gritty tiredness that comes with dealing with pain on a daily basis. It feels me with such an intense shame to even admit that I have a disability allowance to people; I was brought up in a family where I was taught to expect nothing for free, and that I should work hard to earn whatever I need. The services at my university are excellent, and really helped me with the issues my condition brought to studying – but I always feel so guilty that I’m taking funds away from someone with a more serious condition. I don’t feel that I need help, that there’s nothing wrong with me, that someone deserves help more than me. I have a stigma that I give myself, a sort of inbuilt denial to help me cope with it.

     
  16. I'm taking a nap

    June 7, 2012 at 1:26 am

    Such an eloquent post, dear. You wrote the words of my heart here and I’m sharing it with everyone I know. Who knows, maybe your words can change someones thinking.

    Many years ago, before my diagnoses of Fibro, I was sitting at the front of the bus when a man got on and sat a little farther back. He started grumping about me sitting in the handicapped area, that I was “obviously just a fat, lazy slob that can’t get off her fat ass and let an old man sit down” I let him ramble on a moment and, looking at my mother who was sitting beside me I smiled tiredly. I looked at the man and said “you talk like you know me so well, Sir. Well, did you know that I just got out of the hospital after having heart surgery? Did you know that this lady here (pointing at my mother) just two weeks ago had a breast removed because of cancer?” He looked surprised then looked away with an apology on his lips.

    I think it comes down to assumptions. People see someone that looks healthy and immediately assume they are. Looks can be deceiving as we all know. Too bad people open their mouths before they open their hearts.

     
  17. My Ox is a Moron

    June 7, 2012 at 2:52 am

    Oh Sweetie! My heart aches for you. I don’t live with chronic pain but my mother does and I watch her struggle daily. I do live with the stigma of unseen disability. After 10 years struggling to work a regular job and two years trying to find another way to support myself I finally gave in and applied for disability. I expected to be turned down and have to fight for it, but apparently I’m really as sick as I feel. I received my first disability check just a couple of weeks ago. I’m somewhat embarassed, but, like you, I have to take care of myself and my daughter somehow. I will keep looking for something that I can do from home when I feel well enough.

    When people ask you what you do tell them that you are a writer. If they ask what kind or what books just tell them that you write about health issues for an online audience. Much love from the mountains of Utah!

     
  18. Post Traumatic Dress Disorder

    June 7, 2012 at 3:17 am

    After standing by me while I was in treatment for an eating disorder, my friend has recently been diagnosed with fibromyalgia. I really want to be able to support her as well. And reading your post, I was wondering if you had any suggestions besides just being there for her. x

     
  19. lalalemzo

    June 7, 2012 at 4:02 am

    I think you’re brave anyways. Invisible illnesses aren’t easy to deal with, and I know what it’s like to hurt without any real reason. Thank you for sharing this.

     
  20. NZ Cate

    June 7, 2012 at 5:48 am

    This is an excellent post and describes fibro so well, as well as the consequences for life with it. I’d really like to re-blog if that is okay. I don’t want to just do it because of your privacy issues. I just think you have explained something that I’ve dabbled at trying to explain but never been satified with it. I’d really like to offer my readers the benefit of your writing. Thank you so much for writing it. :-)

     
    • halfwaybetweenthegutter

      June 7, 2012 at 1:04 pm

      Of course you can re-blog! Privacy isn’t an issue for me in blogworld, just real life, and I’m touched you’d consider it :)

       
  21. thebirdieflies

    June 7, 2012 at 5:49 am

    You know, when I first began reading your blog, I was every bit as judgmental as these people you talk about. I don’t really want to go into the details of it, because it’s not nice.
    I couldn’t really help it, I’ve never known anyone personally who has been diagnosed with an invisible disease. My pre-conceptions of disability were fairly typical – how can it hurt all the time without a cause? Etc. I never knew anyone with a mental illness either.
    However, over time, as I came to read more about you, I changed what I thought of you. I had an open mind, I wanted to know what you had to say.
    In fact, you’re just one person, but I’ve become more sensitive to people and their situations in general. I’ve learnt that what I read about you at first was only a small fraction of the story, and one should never form an opinion of someone based on that.
    Not just that, I know the dynamics of living with an invisible disease now. And how drawing the curtains doesn’t help depression :)

    All I can say is, thanks for sharing all of this and helping me become a bit of a better person :)

    Lots of love.

     
    • jenni

      June 7, 2012 at 8:07 am

      I know exactly how you feel as i’m a fellow fibromite. I also have other body bits failing on my too. So don’t ever feel that you are alone (soft hugs).
      The general public don’t completely understand about fibromyalgia so they can’t comprehend what ‘we’ go through every day.
      I get stared at all the time as i have to use a wheelchair and have a ‘driver’ as i can’t self propel anymore. I just say ‘hi can i help you’ or say to my driver, ‘look i’ve still got it, people are asking themselves whose the gorgeous chick in the chair’ lol
      Most people define us my our illness, but I don’t know about you but theres alot more to me than my mobility issues and ouching alot. Never forget that you are not more than your ouches too.
      If you ever want to chat, (I’m a UK resident) more than happy to email you

      loads of squishy hugs from me to you

       
      • halfwaybetweenthegutter

        June 7, 2012 at 1:13 pm

        ((very gentle hugs))

        Haha, I love the gorgeous chick in the chair comment; I often make snarky comments at those who jostle me when I’ve got my stick, telling them to climb a bit further up my colon if they wish.

        I mean, come on! I’m in my twenties and I have body-image issues… why on earth would I want to be using a walking stick?! It’s not for fun!

        I do know there’s more to me than my mobility issues; that’s what I hang on to when I’ve had a bad day. I have chronic pain, but I’m not made up of it. I’m a person, and I’m glad you see that about yourself too. It’s hard to feel you’re a person sometimes, underneath all the pain.

        Thanks for the offer of the chat :) I’ll email you my address in a little while!

         
    • halfwaybetweenthegutter

      June 7, 2012 at 1:09 pm

      No, you weren’t every bit as judgemental, because whatever you thought you didn’t say anything cruel to me, or try to disprove my pain; that’s the difference. Heck, I judge people too. We all do. It is hard to get a full picture online, and I know quite a lot of what I write makes it seem I’m often the captain of my own fate. I often have been!

      I’m glad you’ve taken something away from all this :D It really makes me feel I’m doing the right thing. I’ve learned a lot by reading other blogs, and I always considered myself to be quite open minded. I had prejudices which have been solved by reading about other’s lives. I had a hatred of bipolar; well, not bipolar, but the manic symptoms. J (my ex) was a horrible man, and because he was bipolar I assumed everyone with it was like that. I know differently now, and I realise it was just him being abusive, not the mental illness. He would have been abusive anyway. Life’s all about learning :)

      Thanks so much for taking the time to read this, I know it’s yet another massive post! I just can’t stop once I get going.

      Lots of love right back x

       
      • thebirdieflies

        June 8, 2012 at 7:36 pm

        Um, I wouldn’t ever say anything cruel to someone I don’t know. But I’d talk to my friends about what I think of them. And um, I did that, in case of your blog too.

        Anyway, I’d like to put that behind me, now that I know better. :D

         
        • halfwaybetweenthegutter

          June 12, 2012 at 12:43 pm

          Ah, don’t worry about it. As long as you didn’t say it to me, it’s okay ;)

           
  22. hypercryptical

    June 7, 2012 at 8:48 am

    Thank you for your informative and educational post.

    In some medical and nursing circles the belief persists that fibromyalgia is ‘all in the mind’ and regretably seems difficult to shift… it is little wonder then that the general public believes this too.

    Tis is problem that has existed in medicine throughout its history, MS and diabetes were once viewed as ‘hysteria’ …

    Hugs.

    Anna :o]

     
    • halfwaybetweenthegutter

      June 7, 2012 at 1:15 pm

      Oh yes, MS, diabetes, heart problems, gynae problems… they were all in the mind once, so I do hold out hope that one day fibro will be just as accepted as they are. That’s why I’m so glad that it’s finally been included in the BMJ; it’s now an undeniable illness to the medical world and whether some doctors like it or not, they have to accept that.

      Hugs right back!

       
  23. The Bipolar Project

    June 7, 2012 at 10:00 am

    Thank you for your post. It is so important that people read posts like this, to understand the reality, to see what it actually is about. I’ve noticed that people without chronic illnesses of any kind have little comprehension of what is involved. As for me, I don’t make a big deal of this on my blog, for privacy reasons, but I am doing my masters research on the psychological consequences of fatigue in patients with rheumatoid arthritis and ‘healthy’ university students. The literature is filled with how mood affects fatigue, it’s popular to assume that fatigue is a consequence of low mood. But there is no systematic quantitative research (at least that I have found so far) on how fatigue impacts on mood. I want to change that.

    But all that aside (I thought you might be interested), I admire you for what you do here with this blog, and I agree whole heartedly that there is a huge lack of understanding of how chronic pain, or prolonged fatigue impacts on people’s lives. It’s hard to know until you’ve experienced it.

    I’m of the belief that people put down those with chronic illnesses, say their lazy or whatever because they don’t want to believe it’s possible that life can be nothing like what you expected it to be. That people can live like that, live with huge amounts of pain and disability. If they believe it’s possible, then they are accepting that it could happen to them. And they don’t want it to happen to them.

    Sara

     
    • halfwaybetweenthegutter

      June 7, 2012 at 1:28 pm

      “As for me, I don’t make a big deal of this on my blog, for privacy reasons, but I am doing my masters research on the psychological consequences of fatigue in patients with rheumatoid arthritis and ‘healthy’ university students. The literature is filled with how mood affects fatigue, it’s popular to assume that fatigue is a consequence of low mood. But there is no systematic quantitative research (at least that I have found so far) on how fatigue impacts on mood. I want to change that. ”

      What a fantastic masters! What was your initial subject? This is the sort of thing I’d love to do. Good luck on changing the lack of research; it’s a very important subject and could make a huge difference.

       
  24. Catherine Burden

    June 8, 2012 at 12:38 am

    I’m happy to hear that the Lyrica is giving you some sort of relief. I totally get what you are writing about, I don’t remember my last pain free day. Driving is more difficult for me, and most times I rely on one of my kids to drive me around or the husband on his day off. The worst thing about being disabled? I don’t look it. I have had more dirty looks then I can remember because I park in the disabled parking (I have a pass), I can’t walk far either without falling on my face. What keeps me going is my great support system and the fact that I remind myself daily there are people worse off, even when I am laid out in pain.

     
  25. NZ Cate

    June 8, 2012 at 5:10 am

    Reblogged this on Infinite Sadness… or what? and commented:
    I don’t often re-blog because if I’m going to it has to be something extra special that I just don’t think I could find a way to say myself. This post by a blogger friend of mine really sums up what Fibromyalgia is and what it’s like to live with. I really don’t think I could say it better so I appreciate her allowing me the opportunity to share this with you.

     
  26. Human In Recovery

    June 8, 2012 at 6:36 am

    I was first diagnosed with fibromyalgia when I was 19-20 yrs old. Today I turned 43. I’ve also struggled with dysthemic depression that entire time. I’ve had enough periods of “functionality” to hold down jobs – generally no longer than a year and a half or two. Although, I did manage one for almost five years, even though I had to cut to part-time hours. It’s been a struggle raising two children through my chaos & disfunction. Now, I’m raising a third ( she’s 3 1/2) and watching my almost 19 yr old go through some of the things I did before my diagnosis. Thanks for sharing your research and experience.

     
  27. Sue

    June 12, 2012 at 2:10 am

    I suffered with chronic fatigue syndrome for over six years. That was over six years ago and I still don’t think I will ever be how I was before. It’s gone, for good.

    There are things you see and experience from a chronic illness position that are awful. Not only have you been thrown into this hell, but the people outside of it also become hellish in their normalcy. Well people who go through their entire lives madly doing doing doing because that’s what society says to do – from the vantage point of being ill, they are wasting their lives pissing up against walls. As if being sick and seeing what rather pointless lives so many well people lead isn’t enough, then you’ve got the well-meaning insulting comments or, as in your case, the nasty insulting comments. If people had any idea of how it feels being where you are, I think they would think twice about saying what they say.

    But of course that’s part of the problem, isn’t it. They’re terrified by what you represent. You lurk a little too close to death for their liking, and their blind insistence that they will never get sick is a defense they need to bolster themselves against when *you* come along.

    When what really should be happening in a perfect world is that every person who comes upon you will be supportive, and kind, and encouraging, and helpful, and respectful without being pitying or schmaltzy. In a perfect world that’s what would happen because that’s what you deserve.

     
    • halfwaybetweenthegutter

      June 12, 2012 at 11:55 am

      I think pain takes something away from you; something you’ll never get back, even if the pain goes away. You’ll always remember how it felt.

      “There are things you see and experience from a chronic illness position that are awful. Not only have you been thrown into this hell, but the people outside of it also become hellish in their normalcy. Well people who go through their entire lives madly doing doing doing because that’s what society says to do – from the vantage point of being ill, they are wasting their lives pissing up against walls. As if being sick and seeing what rather pointless lives so many well people lead isn’t enough, then you’ve got the well-meaning insulting comments or, as in your case, the nasty insulting comments. If people had any idea of how it feels being where you are, I think they would think twice about saying what they say.”

      What a fantastic way to describe it; you’ve nailed exactly how I feel. I sit on the other side of society, watching them run around like ants, determined to get the best job, the biggest promotion, the most expensive house, and I think… why? You can’t take it with you, and I know all too well how everything can come crashing down in the blink of an eye. Fancy cars won’t help if you’re stuck in bed for weeks on end, aching in every single part of your body. Money helps, but only a little. People become more and more fragmented and society is pulling apart, yet when disability hits you need people around you.

      I don’t know what’s worse. The well-meaning insulting comments, or the nasty spiteful ones. At least the spiteful ones are created from ignorance and stupidity.

      You’re very right. I do think people fear what could happen to their bodies and minds; something they can’t control through apps or a fancy holiday. I love how you’ve described it. Could I quote your comment in the future?

       
  28. S.

    June 23, 2012 at 7:15 pm

    Oh Darling! You already have many other wonderful and well thought out comments that I don’t have much to add to, but I echo all their loving words.
    I guess I just wanted to say that this post spoke to me. I had a two level spinal fusion in March 2011 that has not fused. It will be eighteen months since my surgery in August and I am looking at more surgery… Right now I have sciatic nerve pain all the way down my left leg and my L5 and sciatic in my right leg. I can’t sit for more than 20 minutes without my pain increasing exponentially, nor can I stand or bend down. I lie down for fifteen minutes every hour, even if I am in the middle of something fun and exciting, even if I don’t feel like I need to right hten because if I don’t I get a flare up that can last weeks and increases my pain to levels that make it hard to deal. I have been on Fentanyl (a trans-dermal patch that is 1000X the strength of morphine) for almost a year, after getting up to over 2000mg of Morphine a day, and I am on Workman’s comp who have forced me back to 12 hours of work a week. Like you, I find it difficult when people look at me and can’t understand why I walk so slowly, or why I won’t get that product off the bottom shelf. (I work as an assistant manager of the front part of a pharmacy and that means that half my staff know the meds I am on because i fill them there.) No one understands. And everyone, except my doctor and surgeon who are wondering how I am working at all with my spine hanging on screws, thinks I should be better than I am.
    My friends have long ago taken leave of me. My (ex?)best friend has gotten engaged, married, pregnant and had the baby in the time I have been injured. And although I don’t have Fibromyalgia (my mom does and has been after me to get tested, but I can’t handle another diagnosis.) my non-union of my spine means that my upper back works a lot harder, and my hips protest any movement at all, not to mention that my lower back muscles have not come back together under my incision and they hurt sooo soo much.
    Okay so that is enough of complaining. It is just so nice to meet someone in their twenties that is dealing with the same things. (I hurt myself when I was 24 and I am 27 now.)
    You are right in saying that no one else can know your pain. Pain is relative to those who feel it. But I do think I can say that I empathize. We may not have taken the same road to get here, but we do share a lot of similar feelings and frustrations.
    I hope today is a good day.
    Tons of love,
    xooxox – S.

     
  29. Jae

    June 23, 2012 at 11:05 pm

    I’ve only had the Fibro dx since Dec 2011. I’m so very new to having an actual DIAGNOSES to explain my pain and fatigue. I used to think all Mom’s are tired as shit, and all have daily headaches, stiffness and pain. Duh. It was only after I stopped drinking that I could NOT deal with the pain and fatigue anymore. Then, for 3 years, I shuffled from doctor to doctor, looking for an answer. :) I finally got one.

     

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