I'm new here. After about 15 years of suffering with aneamia I've finally realised I need to reach out to others. It's such an isolating thing to have. Those close to me do their best in trying to understand what it's like but I think I can only say that my Mum gets it the most.
I've tried to explain my best to others close to me, and they do well but I can't help but feel that those foggy/tired waves I get are a burden to them. That they think I can snap out of it. And that they can heap all sorts on me because I've had a restful day. I just wish someone close to me knew what that awful tiredness/drained feeling feels like. It can affect me socially too which in the past couple of years has gotten me down as I used to have so much social energy.
Would love to chat with anyone who feels the same. I reckon a load shared is a load lightened.
Claire x
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Claire80
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A big welcome to you...I'm very new here too. I only joined last week but have already found so much helpful advice and support. I'm not even diagnosed yet...just on the battle to get there. I hope you can chat away here and find like minded people. My whole life is a sea of fog and exhaustion at the moment so I can empathise !
Hello Claire80, I'm new too and totally understand what you mean. I often feel that people think I'm boring or lazy. I'm neither. I was once the life and soul and feel a shadow of my old self. I often wonder where I went. I'm sure they don't think your a burden. It's just knocks your confidence.
I hate that anyone has to feel like this but it's nice to have others who understand. I'm not like it all the time but have what I call waves. I can be fine for a few weeks and then need total rest. Which like it is at the moment, doesn't help. You're right about not being a burden, I'm sure my loved ones just want the real me to be present but need them to let me be in those times. Tough one huh.
The tiredness part I get used to, but I totally get you on where did the old me go? I feel like I can't even hold conversations in social situations which has knocked my confidence recently.
I think though this shows we need more self care and love towards ourselves
A little tlc to oneself is essential to well being after all we are responsible for ourselves. I can sleep on the spot. I yawn when people are talking and it embarrasses me. I'm just learning about all this and I'm really hoping there is light at the end of the tunnel. I'm only 46 but I want to go to bed at 7.30 and I know I'd sleep 12 hours soundly. It's so frustrating, I feel like I'm wasting my life 😔
i am 45 and I am just like your explanation. i use to love being around people now i cant do crowds . i am hoping there is a miraculous turn around for the better for all of us.
You have just totally described me!! I feel as if the old "me" has been removed. I was once the life and soul too. Now I can't work, drive, go out, even go upstairs without being exhausted/breathless. It's soul destroying It's nice to know we can support each other on this journey !
Oh the driving thing has really got to me recently too. Just want to be 'normal' and not feel like there's days I can't drive but hey - people have other conditions which affect them driving too.
Hi Claire80 I know exactly how you feel. I was diagnosed in 1972 at the age of thirty with a sick wife and two children under five. My then doctor gave me two years to live unless I had B12 injections every four weeks for the rest of my life.
Down through the following 40 odd years I lived in complete and utter ignorance of what P.A. was all about as I didn't know anyone else who had it and the succession of GPs and nurses (who gave me the jabs) never asked me how I was coping and although I experienced the return of some neurological symptoms in the run up to my next injection I never said anything to anybody - just slipped in the occasional three week one.
Work colleagues and friends could never understand why I was so listless and lackluster when my energy levels were so low that I couldn't take part in any physical activity.
It was hard on my girls although they grew up with (as my wife Valerie and I described ourselves) two old crocks. Valerie had a leaky heart valve caused by undetected rheumatic fever when she was a teenager and I had my P.A. Sadly Valerie died undergoing heart surgery 25 years ago at the age of 46.
Some six years ago I made the mistake of telling my nurse "I'll see you in three weeks". and she refused to do an injection at that time because my prescription for nigh on forty years has read "every four weeks" and she reported me to my doctor who called me in and told me he would not change the frequency despite my explaining my returning symptoms during the third and four weeks. He said it couldn't be my P.A. because I was getting the B12 injected.
I then joined the Pernicious Anaemia Society and my first question on their then forum was "Am I the only person in the world...... etc" The number of folk with the same experience amazed me. I was not alone...!
I have since succeeded in arguing my case and now am prescribed my B12 every three weeks and I'm still "clivealive" at 75.
There are lots of lovely people on here who will be able to give you good advice.
Thank you so much for reaching out to me and sharing your story, I really appreciate it. And gosh you've been through it. I'm sorry to hear that.
It definitely does makes sense to look out for our own health, I'm doing lots of research and I hope what I learn and put into practise will alleviate things.
Really glad to have found this support, I actually went into work today much happier from all the support I've revieved since posting.
This is how I get, the couple of weeks I have energy I keep going to the point I probably burn myself out, the tiredness last from 1-3wk not even a knock on the door can get me up, it gets me down to the point the doctor says it's depression so I've no idea
I questioned the depression thing too. But I know deep down I'm not. But I do feel apathy and very blah at times. Almost like no ones home! It also frustrates me and sadly, has brought me to tears, secretly in the toilets on a night out because I couldn't socialise like a used to. Then recently I thought, well no wonder that gets me down!
That's why I wanted to reach out. Please connect with me anytime, I'm here to support and I'm pleased to find out lots of lovely people here x
Aw bless you. I have made excuses to avoid social situations, it's rude to start clock watching because your so tired and have no energy to converse with others. No matter how much you enjoy the crowd of people your with if the candles burnt out it's out.
I think people just think, have a nice cup of coffee and you'll feel better in no time. It's a weird illness, so many people know so little about it (including me and most GPs it seems). Nice to know we're not alone with P.A.
I do like a cup of tea and wish that's all it took. But I'm a big believer in letting it be and going in it's own time. I'm trying to explain to those close to me from time to time that it's not about a little bit of a rest. We'll get there if we keep trying
I know exactly how you feel. A conversation at home went like this: I thought you were going to paint the bathroom today! Me: I'm too tired! What have you done all day? Me: Sit on the sofa! So why are you tired then? Didn't you sleep well? Me: Yeah, but I'm still too tired to paint the bathroom!
The paint is still sitting unopened in the bathroom a month on, waiting for me not to feel too tired to get on with it. But in my defence, I have had the filler and sandpaper out on and off.
Sometimes I wish that I could swap bodies with people (especially doctors) for a few hours and see how they like the mind numbing, energy sapping tiredness. Maybe they wouldn't think that I was just bone idle and boring then!
I was on b12 for two years and then in August the doctor wanted to see if I could cope without it. I now know my answer it not for too long! Can't wait to feel the benefit of the injections again
I recognise what you say about the exhaustion being in waves with periods of feeling fine in between. I now realise I was like that for several years before the periods of well being disappeared.
I don't want to depress or scare you but now is the time to find the cause and hit it before it hits you! I put my tiredness down to " going beyond my energy" when I had nearly an acre of garden, a huge house and paying guests to take care of all by myself. It seemed logical to me to feel tired at times. I sold up as I wanted to return to the UK and it was after 2 years here I began to feel really ill.
GP did some initial tests. Told me my bloods were "fine" ( they weren't) a chest X-ray and ECG, all o.k. Thank God I did private bloods and posted the results here. Found out what was wrong and improved within weeks of s.i.
My G.P told me I probably had post viral fatigue, "go home and rest" I'd still be spending most of the day in bed, hand tremors, losing my balance, brain fog, tinnitus and so on if I'd listened to him.
Learn all you can about your symptoms and back up with blood test results if you can. Good luck.
Thank you I really appreciate you sharing your experince, I agree it's time to try and get to the bottom of it myself. I've decided to lessen the amount of gluten I eat as apparently it causes inflammation and so does lack of b12. I definitely feel better when I reduce it. Hope there's other things I can find too. Interested to hear anyone else's tips too.
Thank you for posting Claire. I hope it has been helpful to you to hear other people's stories: it's certainly helped me. Hoping everyone on here finds some support & gets to feeling the best they can be in these weird new bodies we seem to have woken up in!!xx
I'm so glad I finally posted, the support has been brilliant and while I wish no one else had to have this - it has made me feel stronger for knowing I'm not alone in my frustrations and experiences. I hope we can all find ways of overcoming this and thrive x
You are not alone Claire. I am here too and feel alone and nervous about this disease. I have just been diagnosed 3-4 weeks ago, although I've been sick for a long time and have been told my whole life that I have low b12. And I also have been fighting with my thyroid disease to get my levels balanced again. I am a shell of my former self and hope that I can have some kind of normalcy once things get balanced. Luckily, where I live we have opportunity to get as much b12 as I need. I am just started to peek around the corner of life and can do more things than I could 3 weeks ago. This diagnosis seems to be more rare where I am. Not many doctor's know what to do with this. I am telling them how to treat me based on learning from the pernicious anemia society and these support chat rooms. Any time you want or need to talk, please reach out. Jeri
Thank you so much Jeri, that's so kind. And I am here too anytime.
I'm glad to hear you're getting what you need. I'm going to try and put together a wellbeing plan for myself after researching as much as I can and then see what affect it has.
I hope you feel in balance soon because you deserve to feel your best self. But in the meantime a shell of you is better than no you, we'll get there xx
Hi guys I am new too just reading about PA I have low b12 just spent last Friday night in casualty after a black out,whacking my head ,reading about the yawning which I do ,going to bed at 7pm never later than 9! Sleeping for 12 hours and still yawning just after getting to work,driving last Thursday I was nodding off I had windows on my car open pinching my self to stay awake I can feel my head drooping ,I never drive on the motorway because of this,
Looking forward to reading info on the forum it's a life line ,family love you but don't always understand you.
Hi clair80 first appointment with Dr today they called me in after collapse I have done private bloods which confirm low vitb12 ,I have just had problems with no thyroid tsh hormone supress for over 1yr I finally got access to my blood results and got my self to normal tsh and collapsed almost that day ,no joy from drs so I did private test which I am taking with me today, ive been reading up and it's just what I have been dealing with for years it's just got worse in the last 18mths so grateful for the support group I will update with any new info xx
It's been 5 years for me, with the waters muddied because I was diagnosed right after 8 months of cancer treatment and a bout of pneumonia...still on hormonal treatment for breast cancer, which also causes fatigue. Horrible fatigue and chemo brain for a couple of years, debilitated on a daily basis, but I continue to have a baseline level that is so much lower than it used to be, with waves of exhaustion like several others have mentioned. Still trying to tease out what is PA, what is the hormonal treatment, and what is long term effects of chemo (in some people the fatigue can last 5-10 years).
Interesting to hear from others that it comes and goes...I kind of assumed that it would decline steadily from one shot to the next...like letting air out of a tire. I find I'm OK for awhile, and then kind of crash, but sometimes it's not that obvious. And sometimes I'm OK for longer periods than others.
I've generally stopped talking to friends about it, I'll get "oh, we're all getting older" or "maybe you should try a low-carb diet" or "gee, I'm tired too because I worked all day" (I *wish* I could work all day!!).
Wow you've really been through it. I hope all went well with your treatment. I can't imagine how exhausting it must all have been/ is.
When I'm not on the b12 injections that's when I have good and bad days. But when I was on the injections regularly I was great - like a bouncing bunny for 8-10 weeks l! I couldn't wait for my next injection. I've now been off it for 8 months and I was feeling fine for quite a while but now I'm at the stage where I'm feeling desperate for my injections. I'm booked in for a blood test and can't wait to get back on it.
Are you able to take the b12?
Those conversations with friends and family - so frustrating. I really feel you on that. I know they're trying to help by saying they can understand but really...they just have a normal almost nice sort tired from working etc.
It's amazing how many people have this condition but yet I've never met anyone else. I'm so glad to have found this forum
Please reach out anytime - I'm always here for a chat x
Yes, I take B12. My doctor agreed to allow me to have more than one per month, but the pharmacy insists on running everything through the insurance company, who limits to one dose per month. So I order ampoules from Germany and my husband injects me whenever I feel I need it. Even then, whenever I ask for an injection he says "Already? Didn't you just have one a couple weeks ago?" I point out to him that the whole reason for him injecting me was so that I could have them more than once a month! Recently I printed out a pie chart from the PAS website that showed that 49% of those surveyed needed jabs every two weeks or even more frequently.
That sounds so familiar. I know the injections make me feel much better but they do wear off and so it's an ongoing battle with b12 but then husband can't understand why I'm not always full of beans when I'm receiving the injections. I know it's hard to know if you don't have the condition but it gets wearing having to explain every time. Like I have to justify why when I feel I'm not up to doing something.
I totally understand what you mean. I am just going through all the testing but i have nuro symptoms along with extreme fatigue and much more. none of my family understands at all. have you taken anyone of your family members with you to the dr. as maybe the dr. could explain? Where are you from? I live in New Hampshire right on the Maine boarder .....please hang in there and know you are not alone in this.
That's a good idea. Although my doctors aren't always the best at being explanatory or supportive. I think though that it is worth a try so thank you for that suggestion.
The neuro side of things is so horrible isn't..those times when you can't remember a name or the funny bits in a film you watched yesterday and loved! I am such a to-do list girl. Don't know how I would cope without it. I think also I need to try mindful meditation, worth a shot I guess.
I'm in London, UK. So lovely to connect with you, always here for a chat
Thank you all for your contact, I'm really bowled over by the support and I'm so glad I decided to join the forum. I actually feel happier for it, knowing I have a safe place to explore and discuss this condition.
Here's to getting a handle on it and thriving. I'm here for a chat anytime and welcome to anyone who joins the chat.
Thanks for starting this thread! I'm a newish member and was diagnosed four years ago (anti IF antibody positive, a genetic inheritance from my father) and it's been very interesting reading the replies - made me realise I really am not alone with my symptoms. The endless exhaustion, the fogs, the neurological symptoms, the crash days, the curling up in a ball and crying on bad days when you realise the rest of your life will be like this: I'm actually much more cheerful for reading that I'm fairly normal for this special group of people!
Hi Claire ,I'm new here and certainly "get" you .when you are living with this alone it's all to easy to mentally beat yourself up and convince yourself you must be lazy and wasting your days as the overwhelming tiredness takes over.so thank you for posting ,I'd be more than happy to chat at anytime x
Are you receiving treatment for it. So pleased that I had a good weekend this week, woke up feeling great and celebrated birthdays with lots of energy. If only it was like that all the time Haha x
That's great to hear Claire ,I'm really pleased for you .you will be feeling on top of the world........its just bn the usual meds from gp which haven't agreed with me so been trying things myself ....I've not long surfaced to try n get the essentials taken care of .Tomorrow is another day lol x
I really have to work at *not* beating myself up. I always have a to-do list that is longer than my time or energy. And if I'm lying on the sofa when my husband gets home, I feel guilty and am afraid he's just going to assume I'm being a lazy slug.
When I do have a good day, it reminds me what "normal" feels like. But then I drive myself crazy trying to figure out why every day is not a "normal" day.
Oh wow this is so familiar I feel I'm looking in on my life. I suffer massively from guilt. I really need to worry/care less about what everyone including close ones think of me. I just hate that sense of injustice.
I have a busy job in the city, I run around in my lunch break getting birthday presents for family friends, organising grocery deliveries, picking up bits and bits etc. I get home and keep the house hold going and so on. But if I have a low day I beat myself up whereas even non-aneamic People get tired days but they don't apologise for it.
Its horrible isn't it ? I've always got a very productive to do list that lives in my head.when you have a less tired day you plan all the things you are going to do the next day but it rarely comes to fruition .Maybe our lists are too long which is overwhelming ? X
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