What's the point

Really struggling to come to terms with having pernicious anaemia.

Had a cold at start of year which totally wiped me out - antibiotics from dr because seemed to have gone down onto chest

Had infected sinuses in the last week which again, totally wiped me out - more antibiotics

Live in fear of being refused a B12 shot before I get to 3 months which is the regime in this country but no clear reason why the gap is 3 months (when shots first became available they were done monthly). Get too tired and can't think straight after about 2 months - only one since last shot but cold has me totally dead.

Try to keep going but it's really difficult and I've struggled with work this week. Currently 4 days a week equivalent but feeling that I only really have energy these days for equivalent of 3 days a week and can just see that getting worse and ending up not being able to work at all - and I'll just end up sitting in a stupor all the time.

Ordered some B12 spray as nasal seems to be the second best to injection but not sure that will work but need fall back plans ... or I could just give up and not do anything and just die a slow and lingering death as my nervous system breaks down and I stop being able to walk and stand and look after myself..

Can't see the point in going to doctor as chances are I'll be told I'm imagining things - which seems to be the reaction PA sufferers usually get ...and I don't feel that rational anyway.

Anniversary of my father's death tomorrow :(

Guess I just carry on waiting for Godot

31 Replies

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  • Oh dear sorry you are feeling rough.

    Thinking about you. Keep smiling.

    Treat yourself to something nice tonight.

    David x

  • thanks David - going to go swimming at 1930 but will take it gently - not going to do 40 lengths tonight.

  • Well done

    David x

  • Managed 20 lengths - could possibly have done more but just wanted to make sure I had enough energy to get home.

  • Making me feel lazy. Just sat watching tv eating dark chocolate and drinking coffee.

  • dark chocolate should be good - hope it was full of flavenoids.

    Sometimes its good to be lazy.

  • Love dark chocolate. Its good to be lazy.

  • Hi David. Oh I

    Love Dark Chocolate with

    A up of coffee. Gorgeous.

    You sound in good form. X

  • Hi Hannah, im not doing bad thanks. Think I will put kettle on.

    Hope you are ok. X

  • Hello Gambit sorry you are not a happy camper. This time of the year is awful and I always feel that March and April are the stressed months, when we get into May we seem to bounce back and end of May Bank Holiday our bones are beginning to store the warmth and we can start to look forward to four or five months of long summer days

    All the best,

    BOB

  • thanks bob. Not sure next few months are really going to get any better ...

  • Hello Gambit

    I have just been told I have to be positive, what will happen if I am not, I life to find out

    I am sorry you are going through a rough time, generally you seem quite positive., Life is a real bitch sometimes.

    Generally three months will see you with your B12 shot and looking forward to our Summer Sun.

    When I was doing my youth Work I used too swim near on 40 lengths after work and before I went to the Youth Centre, now I cannot even go into the water as it effects my skin. Have a couple of lengths for me

    BOB

  • Sorry to hear that you can't go swimming - know that you have a lot of problems with getting around.

    Busy time at work and 3 months is probably going to see it getting to its busiest and me to my tiredest ...

    Just finding it really difficult because everyone I come across with PA seems to have issues with treatment - even when I went to the Podiatrist last month and told him that I have PA he said he had a neighbour and she spent huge amounts of time staring into space with no energy to do anything waiting for her next injection. On one level I'm quite angry about it but as usual that's ended up turning inwards into despair.

  • Hello Gambit

    The same with me I have been in all day today and it has been a glorious day. The dog was out, my wife was working in the garden and I hurt myself yesterday after just thirty mins helping out. I also with medication had a near miss with a chainsaw after trying to use it five mins, nearly dropped it on a foot I was lucky the emergency cut out came on as it fell So I have been very fragile and my back is going mad .

    I hope all is ok I used to love swimming and now the water thins the skin it is like

    it is raw.

    We all sympathise with each other here and that is great we all feel for each other

    BOB

  • Hi Bob just to say I think your great your so accepting

    And positive, there is no point fighting against the world,

    It's better to see the sunny side.

    Hannah

  • All the best Hannah

    We all need to keep a hold if not the buggers get you down

    BOB

  • Hi, having an infection drags you down and the antibiotics have an effect on your mood - they knock your body out of balance like most meds.

    With anaemia you will feel tired a lot.

    People with PA can and do live a long and healthy life, so try to keep that in mind.

    I'm thinking you are getting ill often because of the PA which will add to you feeling tired.

    Is there a way you could convince your doctors to give you the injection every two months? Is there an option for you to pay for it yourself in between times?

    On the bright side, you feel better after you have the injection so it's not a constant exhaustion (not sure if you can feel positive about this just now).

    You can hope that the nasal spray will work. If it's not as good as the injection it may just tide you over until you get another injection :).

    If you feel you are in a stupor a lot of the time, you really need to tell your doctor this. Try speaking to a different doctor or try taking someone into the room with you who can back up your case e.g. partner or family.

    The doctors will listen when you can't physically go to work anymore.

    When I was diagnosed with anxiety and depression, the first doctor felt "I was dealing with it" even though I felt I wasn't. I went to see another doctor and told her my uni course was at stake and she immediately put me on citalopram. I don't know if it will work the same way for you and I know you are exhausted but you need to keep fighting! Things will get worse if you don't, esp your depression.

    I think you should try the nasal spray when that comes, you might find it will work really well.

    Hope it works out better for you and hope this post raised your spirits a little :). xxx

  • costs about £120-£180 a shot to go private - which I could possibly afford at the moment but not if I drop my hours and couldn't afford on pension when I get there, if I get there.

  • Try not to think "if you get there". It really brings you down. The way you think affects your body, sounds like spiritual rubbish but it's true. Sometimes I can't help but think like that for example when on my uni course, but it really doesn't help and thinking negatively doesn't bring positive outcomes (e.g. I failed that uni course and recently left).

    If you paid for the private shots (which would only be once in every 2 months or so coz you would still get your NHS shot) you wouldn't need to cut back your hours because you won't be feeling tired and you would hopefully embrace life and your job. I think maybe before you cut your hours back you should look into getting shots privately, keep at your doctor and tell him/her that you are being forced to pay for it yourself and tell him the cost, and use the nasal spray for top-ups if needed. You may find that you won't always need to get your shot privately, sometimes you might be ok with the nasal spray and only need the private shot every second quarter of the year, if you see what I mean?

    You don't have cancer, your prognosis is good. It's just unfortunate that you feel rubbish right now because you are suffering from exhaustion. But you won't have to suffer if you get the shot privately, assuming the B12 prevents you from being tired.

    Don't give up hope, Honey. Upwards and onwards xx

  • Being chronically ill is a real bitch and many people can't even try to understand what it's like. I was ill after Christmas with my 3rd cold but didn't feel that I could take time off when a woman at work said 'you're always ill' - yeah, like I really want to be! Grrr! Your father's anniversary tomorrow is distressing you too, and not surprisingly. Be kind to yourself and try to have a treat just for you xx

  • Sorry that you are suffering

    Its 13 years since dad died and some years I manage to get through without really noticing but doesn't seem to be happening this year.

  • It's strange isn't it how it takes your breath out of you when you least expect it? And, of course, because of your depression you'll most probably feel it even more. Sometimes it's just best to go with your feelings and not fight them as it is so exhausting, but set a time limit and then do something to lift you a little, even if it's only looking around the garden or rereading the messages of support on here. Be kind to yourself, especially tomorrow. Xx

  • hey, i'm sorry you're so ill. it may seem pointless but i think if you can face it go back to the doctors. sometimes you need to badger them for them to listen properly to you.

    Hope tomorrow isn't too bad for you

    thinking of you

    nikki x

  • thanks but don't think I'm up to another trip to the doctors yet.

  • hey, how are you today?

    just wanted to let you know that i'm thinking of you x

  • Very tired and shaky. Will go for walk to local wood where I have a tree I associate with Dad.

  • Pernicious anaemia isn't "pernicious " any more. It is caused by the stomach failing to absorb Vitamin B12 and only results in nerve damage if the treatment (B12 injections to by-pass the stomach ) is not given. The standard treatment is to bring the blood B12 level back to normal by a series of injections, and then to maintain the level with an injection every three months. If PA is the full cause of your problems you should make a full recovery provided you continue the three monthly injections.

    If you're not feeling better fairly rapidly you should tell your GP. The debility caused by the anaemia may have made you feel quite depressed but it will not last .

    PS I am a sympathetic retired GP.

  • Please take a look at the Pernicious Anaemia Society website - they have case studies from thousands of PA sufferers who do not find that the injections at 3 months alleviate the symptoms. There is strong evidence that folate levels also need to be kept in check and also strong evidence that the tests that are currently done to check whether B12 is at the levels that it should be are inadequate, leave alone whether the levels set are actually adequate. I'm also not alone in not feeling that doctors actually listen to me and the only evidence I have from speaking to people is of people suffering from recurrence of symptoms and not being able to get practitioners to listen to them. It isn't in our mind but we tend to be treated that way.

    Sorry, I know you mean well but ...

  • Hi Gambit just to say I have read your post. Could it be anxiety type

    Thing as you seem to worrying too much about not getting the injection.

    I feel you should trust your GP more as they are qualified. I was diagnosed with

    Anaemia too but levels came up and like that Retired GP said it's getting

    The levels up.

    Take care and try not to push yourself as you seem very down and anxious.

    Hannah

  • Do you mean iron anaemia or B12 anaemia?

  • Actually they did total blood tests. It was anaemia and B12 and low inFolic acid. But

    I feel ok now, I guess when we are down and post cold and missing

    Your Dad, that everything gets mixed up and it can be hard to see

    The exact problem. It's like when a lot of little things go wrong, it can end

    Up being a big thing . Take care of yourself and don't push yourself,

    Sometimes rest is good other times excercise is the answer.

    Hannah

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