SO The Drugs Don’t Work….

This is my first Blog. I’ve never done this before, often thought about it but thought ‘what’s the point no one will read it’.. But I’ve got to a stage in life where Tweeting in Twitterworld or posting on Facebook waiting for a ‘like’ just so you know you are not completely alone isn’t helping.

I have a long term illness. It’s not an illness that fits into a neat box or can be given a nice snappy one world title. This is not meant to dismiss anyone with a long term illness. It’s just mines a weird one. But then it’s great to be unique isn’t it? I’ve always liked being an ‘individual ‘ hated assumptions about the sort of person I am.

I’m just… Well I’m just me … Like you dear reader are …. Well…..
‘Just you’.

I’m also a vain ole bat who likes to put on the slap make sure the hairs ok… But this is misleading to even Doctors because no one realises this is my Armour, my Confidence Shield to keep myself upbeat. I don’t do it for anyone but myself …. Well maybe for the hubster who really doesn’t need to see a ‘snarly haired limp lettuce in pj’s ‘every day of his life.

That’s not the woman he married. That woman could dance on the tables, sing embarrassingly in pubs, shop til she dropped, work hard, play hard.

She’s still here inside , dancing laughing singing but , as the saying goes the mind is willing the body’s a crock of shit.. Well perhaps not quite that but every day I wake now I think ‘Today’s the day I will be me again’ but I’m older I don’t bounce back like I should and it’s happening less and less.

I had a great social life but when you have to cancel evenings out a lot the people who stick with you are whittled down to single figures.

These are your true friends.

We live in a ‘busy’ world a world where we rush to work, rush to play, rush to pop money in a charity chiggers tin then rush away again. Say things like I must ring this person visit that person if only I wasn’t so ‘busy’

I have the refrain ‘when you are better I will do this or do that with you” said to me regularly but what is not being absorbed is that after 12 years of my ‘limp lettuce illness’ it’s not going away. I have fought and continue to fight for help with an illness that has no research funding because there’s so few with it. And yet it’s a real physical illness, I know 5 cardiologist and heart surgery can’t be wrong but the drugs don’t work as the song goes and it’s not going away.
So ‘busy” doesn’t help.
I’m not stupid I know people have to work. My husband and I own our own small business. Thank god for the Laptop, IPad The World Wide Wait etc so I can work from bed or sofa to help pay the mortgage etc etc.
But folks the illness ain’t going away. The people are.

I’m not really Eeyotre, I’m Tigger. I’m cup half full (unless it’s a weekend when it’s glasses half full).
When I was a child I didn’t foresee this …. I have dreams goals plans but I’m trapped. I can still laugh think offer friends emotional support because I try not to let my Illness define me.
I paint – not interior decorating painting but Art. I get stuck into history discussion forums for that is my love is history. I bash away with my wee fingers at keyboards and boy do I fight to stay visible.
But the drugs don’t work. The house is empty. The heart is hurting physically and emotionally. It needs feeding with ‘busy’ people; their lives their company . 20 minutes 10 even …. ‘Pop by do ‘ I say …
Remember it could be you.
We all need the sight sound of humanity.
Don’t be ‘busy” be there…..

17 thoughts on “SO The Drugs Don’t Work….”

  1. Keep putting on your brave face, you are an inspiration to us all xxx It’s a great idea to write a blog.

    1. Actually it’s you who have inspired ME and I mean it. The way you write and the person you are is fantastic. It’s a subject is illness that people often don’t like to talk about but I want to try and do it with humour…. Just call me Barbara Cartland dahlink

  2. Strange Karrie but this exact day a year ago I nearly died! I had catastrophic blood pressure beyond 234 over 131 that’s where the monitor stops registering! Then again in January this year my drugs failed and I waited for the inevitable as my blood pressure rocketed! I am as strong as an ox but the system can’t support me! I am on borrowed time, so your not alone! I badly need to talk about it but another part of me just says “Shut up and get on with it!” I just keep thinking of that line in Gladiator: “When death smiles at a man (person) all that man (person) can do is smile back! As Freddie sang: “The show must go on!”.

    I don’t know if it will be heaven or hell but which ever realm I enter into, I plan to be under full power and at ramming speed!

    1. Oh Steve I’m so sorry I know that’s not enough to express how I feel about what you are going through….. I can only say I DO understand albeit I’m not walking in your shoes but my illness can’t be cured and my heart operation caused more problems didn’t solve the heart one no drugs for my particular problem exist as yet and they won’t operate again it would be fatal. My reason for this blog was to vent yes but to put a voice out there for others with long term illness that is invisible to the naked eye but is so utterly physically debilitating. I’m like you I push on try and keep everything going I can , but being housebound for so long with appalling non existent back up by medical care is blinking hard. Are you able to get out and about unaided ? My motto is life is short keep laughing or you cry…. But there are days aren’t there when it hits you, sometimes I think you have to have a rant day to get rid of pent up tensions cos they are not good for the ticket or body. Are your family or friends supportive? Do hope so x keep in touch you know how to contact me. Keep on keeping on ! Karrie x ps I’m not a churchgoer but I do have my private spirituality if you want to call it that I’ve had experiences that make me hope I will see lost loved ones again. If not I leave a piece of myself in my son and my grandchildren that’s a form of immortality my stamp on this crazy world x

      1. The drugs I take give me pain in my calf muscles and makes the soles of my feet tender but I won’t give into it and I make myself walk around five miles a day! Top half if fine so far! Trouble is I can’t allow myself to get too worked up about it all or that will cause me harm! I have always been a fighter and that alas is what will do for me!

        So far everything is under control but knowing how badly and quickly it went wrong last time takes away my faith.

        I have to hide it all because it would worry my children and that means playing it all down to everyone including myself but the big shock was seeing Bob Crow die so suddenly! It brought it all home and sadly I don’t feel that there is a definite future anymore!

        I am lucky in that I can work and that I can get out and about and that if I didn’t tell you then you wouldn’t know!

        But where as some might think: “I can’t wait for Christmas”, I think: “Will I be here for Christmas?” And saying goodbye to the blue bells was especially poignant this year! But this is self indulgent and enough said, so I leave you with a quote which seems to gain more and more credibility to me as the days go by!

        Life is a jest, and all things show it,
        I thought so once, and now I know it.
        John Gay 1685-1732

        If you ever need to vent and a pair of ears that know where your coming from then feel free!

      2. Great quote Steve love it. Yes I hear what you say about Bob Crowe it made my hubster sit up as is same age and join a gym even though doc and all had been mentioning it for many months.

        My philosophy these days is … Take each day at a time… There is no choice for some of us I know but I think it stands up well for others.

        Our company is very busy 24/7 and I’m just glad I can do it in my home (my part I mean couldn’t do Mikes).

        On my grave I’m going to do a Spike Milligan and have ‘see I told you I was ill!’ ๐Ÿ™‚

        I’m here keep in touch grow bluebells all the time indoors have Xmas when it’s not Xmas.
        I don’t know how old your kids are and obviously I don’t know them but my son Tom who is 27 has had M E since 10 and just been diagnosed with Ankylosimg Spondylitis , tells me Mum always tell me what’s going on, for you and I know each other and so I can see in your face hear in your voice the nuances that something is wrong so if I don’t know what it is I worry more. Now he’s a dad of 2 plus 5 step kids he knows what being a parent us like too. I probably talk too much , verbal diorreah maybe but better out than in. Anyway take care xt Thinking of you x

      3. Well I feel a bit of a fraud Karrie when likened to you! Your troubles are debilitating and give you suffering, where as mine just kind of snuck up on me and nearly bore me away and I had scant knowledge that there was anything seriously wrong, other than dizzy spells, nearly blacking out now and again and migraines! My doctor told me that the first symptom that shows itself is usually the one that kills you, I suppose like poor Bob’s. I get terrible pins and needles now and again from head to foot and the trouble with my legs all since the drugs but by and large they don’t stop me from doing what I want to do! In fact that’s part of the problem because if you don’t tell people they won’t know! It’s not like your waving a severed limb at them. My wife didn’t get it at first and I think she only understood when my doctor said that I was lucky to be alive! I have had days which I truly thought were fine days for me, only to find that the monitor has shown it to be catastrophic! I could run a marathon now if I wanted to, I wouldn’t make the end but to all intense of purpose the heart seems up for it ( after all it’s been pumping at pressures which are off the scale) and the mind could OK it. It’s quite bizarre. But it is a dark Shadow and one I have had to acknowledge and in a way the leg problems probably do me a favour in constantly reminding me that I am compromised. I was 53, the same age as Bob when I found out. I spent ยฃ20.00 on a BP monitor only to find that it couldn’t give me a reading and when I did occasionally, it was always the same 235 over 134 and that’s what sent me to the doctors. If I hadn’t spent that ยฃ20 pounds it is unlikely that I would be here now!
        My daughters just turned 15 and my son is 20, they know I have high blood pressure but just not how bad.
        It helps to talk freely about it. My old school pal in Dundee and I can laugh and joke about it since we truly don’t have any boundaries about such things! Like if they could harness my BP I could compete with Green energy! I am worth investing in.
        So I think your page is a great idea and I hope it that it is the forum which you want it to be.
        Like I say if you ever want to vent, please feel free to bend my ear!
        Yes it’s funny but one of the first things which I did was to work out what I want on a headstone, followed closely by a choice of music and then a decision that come what may, I am having another 15 years! I just can’t find a convenient slot for the grim reaper, I have a full appointments book and he will just have to wait for me to get around to finding him a convenient appointment.
        You take care and thanks for the opportunity for me to unburden myself anonymously! It is actually cathartic in the extreme!
        THINKING OF YOU AS WELL! Stephen.

  3. This is my first Blog well you had a few bites wasn’t bad for the first time but alas I like you heart been fixed or so they thought but life goes on with it so perhaps you to now there are very many who they tried to fix but alas they failed but never mind you see being sad isn’t the way smile you see that first blog caught some more jeff3

    1. Not quite sure what you mean. Sorry you have had no luck with fixing your heart. One thing is in all these years is that i have kept a good sense of humour but sometimes just sometimes you need others to listen , the ones who know you.. It’s isolating being housebound which I’m sure you understand. By writing this I wanted to reach out to others like me. With an in curable rare illness that no medics take the time to even want to understand and after 15 years of no duty of care on their part (not through want of me persevering believe me) I want the people out there who have no one to help or support them , will know they are not alone๐Ÿ‘

  4. Hi Karrie, i have a catalogue of ailments, most occurred in the last 8 years after a hospital stay when they thought i had had a heart attack. (now drs tell me i did…even though i was told at the time i hadnt. confusing ugh?)
    i started at 25 with overactive thyroid. that righted itself when i got pregnant with my first child, 13 yrs later was told i had underactive one. fine. tablets kept me going. no detriment to everyday living.
    at 49 was told i had angina,asthma, spinal spondylosis…still nothing stopped me backpacking,walking or cycling miles. THEN. A major op in 1996 brought me back north to yorkshire afterwards after 7 yrs down south. asthma got worse. though i smoked so was inevitable. 9 yrs later i landed up in hospital with that ? heart attack.i stopped smoking at that time and havent had one since. but since then have developed around 25 more conditions from minor to major. 6 of the latter…i have little support. though my sis thimks shes supporting me, usually turns convos to her own problems pretty quickly. i dont mind usually, she has plenty to worry her and her family dont support her much.i try but there are times when i have to vent too,. kids? 2 of them. both have long term conditions, though one is my carer. but doesnt want to know about how im feeling.if things are getting worse etc. has been worse since her dad died suddenly last year. role reversal is tried frequently by her. i am not senile, in my 2nd childhood etc i keep telling her. i dont get asked what support do i need. i either have to take what they THINK i need or do without.
    i tried finding someone to go walking with me. Age uk found someone who it turned out had more problems than i did. severe epilepsy being one.. on the days she managed to turn up to go with me, she would walk so fast i couldnt keep up and got out of breath. in the end had to give up. told age uk. it was no good. my nephew takes me out when i ask him sometimes but charges over the odds for petrol (he charges his own mother though so i say nothing to him. just pleased to get out sometimes.) Now got a wheelchair. easier to push that than walk with walking stick and get further but need someone with me for when ive had grandaughter said she would do that. but it costs me for taxis,lunches etc as she has nothing but benefits for under 25yr old. not sure how much that is but around 50plus pounds i believe, cannot expect her to pay. all this a drain on my finances. so cant do any of it too often.if i need to go shopping i cant do it on my own, need someone with me. but i feel i should pay for them as its for my benefit. none of them seem to appreciate all this.and its getting so im not going out now like i was. not a lot of energy, fall asleep a lot. etc.
    soooooooo reading your blog has made me think.not sure yet where my thoughts are going. but will see. it has inspired me to look deeper at what my lifes about. i do not know you, but maybe will get to know you better over time. keep it up love. all the best.

  5. Hi …I can only call you ‘hugsomum’ hope that is ok Hun? Thank you for reading my first blog and taking the time to comment,

    Good lord you really have been and are going through it aren’t you on the health front and I really admire your tenacity to keep going physically when you can I really do.
    On the emotional side a lot of what you say truly resonates with me.
    The sister coming over to support you but talking about her probs and yes it’s good that she feels she can but it’s supposed to be a two way street ideally isn’t it. I no longer have a sibling but I have found it’s relative strangers and the handful of true friends who truly want to listen, really listen plus lift your spirits share laughter etc etc.

    When it comes to your kids, as you say, we don’t know each other, but you say they have conditions too but one is your carer? It seems from my own experiences that initially the compassion you have been given wears away, if people have ailments themselves they kind of listen to you but really are desperate to offload on you. If you are a good listener and empathetic as you sound to me, then people grasp at this. It’s a weird sort of bond that joins the poorly it seems.
    But family are a law unto themselves sometimes and maybe they have seen you fight on for years and think , rightly or wrongly, you are stronger than you really are, I have to confess I have not been good at asking for help with loved ones, it’s ingrained in me to ‘soldier on’ from childhood but this has I think in retrospect made it worse for me in that people see The Clown I present to the world, the needing to be loved, valued making sure they are ok that I can make them smile,which is masking deep sadness and insecurity.
    Not sure if I’m making sense to you …I hope so..
    When it comes to getting help from and the supporter was worse than you thereby making you, by default a carer in a way for them, I smiled ruefully because it reminded me of the time when my brother committed suicide and the nhs counsellor the GP recommended came to see me in those first dreadful days and asked inane questions, then spent the next 3 sessions telling me her problems… How I should set up a Suicide Support Network…. This is slightly straying from the point but it’s interesting that often people who want to help are often lonely and in need themselves.

    Again as you say we don’t know each other and you can tell me I’m talking out of turn, but ….you have to pay your nephew to take you out? The petrol I mean? Also he charges his mum too? I’m assuming he’s very hard up but aren’t there ways to get assistance for this ? I know the disability benefits etc are being slashed etc but from a moral point of view it’s heartbreaking. I’m not rich but I do not understand this.
    I realise your Grandaughter is on low income too so overheads are tight… Does your local authority not run a transport scheme to take people with health and/or age issues to supermarkets? Have you tried contacting a charity called Crossroads? They are a voluntary charity of people who are in most areas who are often retired nurses, mums with kids at school etc who will come in and sit with you, take you out for trips, shops etc? We used them when my Dad was in the early stages of Alzheimer’s so mum could go out for a bit of respite. Try ringing your Citizens Advice Bureau about them. They were marvellous and a real godsend of an organiisation.

    I would be interested why my blog has made you think once you have digested it all ๐Ÿ™‚ but I think I can see why. Bring physically incapicitated is isolating and lonely, I know this only too well and like you it’s not the relatives that muck in in the way we hope. Maybe they are too emotionally involved or feel helpless so end up doing nothing.
    I am NO expert but just remember I started this blog not just for myself but for the voices crying out to be heard who may just want to let off steam and we are in our thousands sadly. Hidden in plain sight if you like. Take care keep in touch won’t you x

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