Scared

Happy new year to everyone

Sorry for posting again, I've realised all I have done since being part of this forum is post and moan. I am posting again just to talk really. If I'm honest, this PA diagnosis (only was diagnosed about 1-2 months ago and got my second jab next week) is terrifying me. The only things I know about it are negative. My brain keeps fixating on the fact that it is a terminal, incurable condition, rather than the fact it is treatable.

I have always been quite a sickly person, right back from when I was a young child (I'm nearly 24), and I thought I had learned to manage whenever I got sick as it was so often. But for some reason, I am really struggling with this one and it really scares me. And I'm not sure what I'm scared of. So this isn't really a question, more of a cry for help to see if anyone else was/is scared, how they got through it, and any advice. Because if i'm going to have PA for the rest of my life (and hopefully that would be a long life), I want to know how to live the next 60-70 odd years with the condition and not being scared my entire life.

Thanks. M

14 Replies

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  • Moosey, when I had my first injection I thought that was it: a vitamin boost and you're up. Then the nurse told me that it was a course of 6, and then 1 every 3 months FOR EVER. That was when I started thinking this could be serious enough to warrant doing a bit of homework, that understanding a condition would make it less scarey. I really believe that, but then I would: I'm a teacher.

    What I find more scarey is how little everyone else knows: the people you think would have a clue- doctors, nurses, consultants are B12-blind mostly. Get a good Dr that you trust, and help them to learn about what you are going through: keep a chart, write a diary, list symptoms, download information: not too much, and preferably written by an expert. And keep talking to the people here: they are helpful, knowledgeable and above all, kind and supportive. They've struggled too, we all have. Sometimes up, sometimes down, sometimes celebrating small triumphs that no-one else would get, sometimes bigger breakthroughs happen. There are happy bits too, is what I'm saying. Maybe not yet, so in the meantime, post and moan away, Moosey. Won't always feel this way, happy to report.

  • I think most of us would quietly admit to being overwhelmed, scared and wondering what we did to deserve this.

    A little knowledge is said to be a dangerous thing but........

    The more you know the easier it is to deal with the condition. There are some very knowledgable folk on here who can give advice, there are also some who have lived with the condition for many many years. Clive has had it for longer than you have even been alive! So it is treatable and you can at least take your health in your own hands where this is concerned and manage it if you dont get the 'correct' treatment you feel you need. All you need to do is ask and we as a group can give you a hug and a helping hand - you arent alone.

  • Don't worry about the 'moan and groan,' we all do it from time to time. When you get you B12 right for you, and keep an eye on your other vitamins (lots of excellent help on this forum) you will be fine. We have clivealive at 75 and I am even older!

    Good luck, and keep your chin up.

  • Hi Moosey. It's perfectly 'normal' to be scared and frightened when you have a diagnosis relating to a long term health condition - we've all been there at some stage.

    It's especially difficult in the early stages when you're probably feeling quite ill and have to try and take in a whole load of information - when your brain won't work properly ๐Ÿ˜–. And when you have no idea what sort of recovery you're likely to make - because we're all different and it happens at a different rate for all of us.

    The most important thing is to get enough B12 to relieve your symptoms and enable your body to heal. And that's the thing that is perhaps most difficult, 'cause many doctors are ill informed about B12 deficiency and the havoc it can wreak on the body if not treated with enough B12. So dealing with GP's, interpreting blood results, knowing what tests to ask for, knowing what treatment you should be getting....whole host of other things...all go into dealing with this tricky thing called PA. And these are all things that we can help with ๐Ÿ˜€.

    A sure way of knowing if you don't have enough B12 is if your symptoms start to return before,your next injection and you're left to limp along without the one thing that will make you better - a B12 jab.

    And if that happens to you (it doesn't happen to all) you can pop along to the forum and get advice about what you can do - so do 't worry about that.

    It's also worth noting that if you lived in Europe you could pop into a pharmacy and buy a shot of B12 whenever you needed it. And dogs with B12 deficiency get injections every week. Why am I saying this? To show you that if you have problems getting enough B12, the problem is with the system - not with you. And if this happens, again, don't worry - many people here choose to self-inject B12 if let down by their GP's. It's very safe and easy to do and we can advise about where to buy safe supplies if you ultimately decided that this is what you want to do to get and keep well. I'm saying this to reassure you and so that you won't have to panic if your GP proves difficult - there's always a way of dealing with these things.

    And something else - reading this forum can sometimes be quite harrowing. We read every day of people who struggle for a whole variety of reasons, and turn to this site in desperation. What we tend not to hear of are the people who pop along to their GP, get their B12 jabs, and carry on a normal healthy life with little impact from PA.

    Yes, it used to be a killer disease - but that was before B12 injections (I think about the 1950's - someone tell me if that's not right ๐Ÿ˜€) but there is no reason that B12 should be a 'killer' nowadays - though it's scary to think it used to be.

    And clivealive has been living with PA for more years than I care to count ๐Ÿ˜€.

    So...when ever you feel scared or frightened pop in for a moan and a chat. And when you need advice or support just put up a new post. There are always folks around who will pop in to help you...so pop in as often as you feel the need...and try not to feel too scarred...thing may look very different in several months from now ๐Ÿ˜€.

    Take very good care...and here's a hug x

  • You said you had always been a sickly person Moosey...... may be this is the reason why and from now on things will be better. I do hope so. Best wishes.

  • Hi Moosey

    From what you say I expect you are quite tough, to have weathered the sickly times - maybe this treatment could really change your life for the better. For me, the jabs were miraculous and I am longing for the next... maybe you will feel as positive after yours after a bit. Hang in there. I've found this forum really positive and, as lisahelen said, we've all had those scary thoughts. It is scary- but try to be glad you have a diagnosis and a route to treatment, and believe it will get better - because it will. Good luck, and don't worry about moaning! Mashie x

  • posting this link in case it helps - about anxiety and how it works - may give you some ideas about how to get out of the loops that you find yourself in.

    healthunlocked.com/couchtob...

    I went through a lot of anxiety in the past - one of the worst scenarios was pre-menstral - which wasn't actually anxiety it was the way my body was interpreting the hormonal changes and I would drive myself nuts trying to figure out why I was feeling anxious. Things got a lot easier when I realised that it was just a response to the hormones and going round in circles trying to pin it on something else was just making me more and more anxious.

  • Hi Moosey I was given two years to live back in 1972 due to P.A. at the age of 30 with a sick wife (heart problems) and two daughters under the age of six - unless I ate raw liver three times a day - or had B12 injections every four weeks for the rest of my life.

    Much as I love cooked liver with bacon, mashed potatoes, onions, greens and gravy I opted for the injections and I'm still "clivealive" at 75.

    Sadly my wife Valerie died undergoing heart surgery in 1992 but my daughters are now 50 and 48 both with two children of their own. I married Gill twenty years ago. She was a "checkout girl" at my local Tesco Supermarket and I now have a 40 year old stepdaughter with two children under six - so believe me Moosey, there is life after P.A.

    Please just make sure that you have and keep a healthy level of Folate as this is essential to process the B12 you are having injected.

    I wish you well for long and happy future.

  • Thank you clivealive Gambit62 Mashie44 pugdogs10 Foggyme beginner1 Lisahelen Cherylclaire - you've all been such a big help. I am s till anxious about it but you've made me feel so much better as it's normal to feel anxious. I think i need to admit to myself that it's early days. I have only had one injection and I have heard it takes at least 3 usually to start feeling an improvement. So thank you very much. x

  • Remember Moosey you are in this for the long haul there is no quick fix so do not be discouraged if it takes a while to get better. You will get there, and let us know how you get on.

  • Hi Moosey. Really please you feel less anxious ๐Ÿ˜€.

    Just to let you know...individuals react differently to B12 injections in terms of recover times so please don't worry if it takes more than three injections to start feeling better...just come back if you're anxiety increases or you need some friendly words ๐Ÿ˜€.

    Very best of luck and I hope you start to feel better very soon ๐Ÿ‘

  • Hi Moosey,

    You have had some excellent advice on here which I hope you find reassuring.

    To add my two pennorth, I have had PA for 47 years, diagnosed at the age of 20. Now I live in France and I have never felt better. Why? No problem having injections as often as I want/need, though I now prefer to self-inject and buy my supplies on the internet. The doctors do not seem better informed than in the UK, but there is a culture of taking responsibility for your own health. For example, here you have a copy of all your medical letters, lab tests and x-rays, and it is up to you to choose a consultant and make an appointment. Having looked back over all the years of various symptoms which spoiled my life and my health, I wish I had realised sooner and taken things into my own hands and insist on more frequent injections. But of course when you are poorly you cannot fight for yourself so easily. I was lucky and have not been left with too many permanent symptoms. And I didn't have the help of the PAS and the wonderful people on this forum.

    I wish you all the best on your PA journey - let's hope that the only way is up!

  • I rather like the sound of how things are done in France, it is quite a positive thing to be able to help yourself and not be made to feel that you are doing something wrong as we are in GB. I have not told my doctor that I self inject but I would like to be able to and feel discouraged by his attitude. such a shame really but maybe one day.

  • Moosey,

    I've been having B12 injections since February last year- and never felt ANY of them until last week. Even now, although they seem to be commonly considered painful, they don't hurt me at all- I just feel a needle going in. What I'm saying is that while some symptoms go straight away (even ones that you did not realise were symptoms), some of the improvements could be very slow indeed- either that or this is a very bad case of "Where there's no sense, there's no feeling"!

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