Helping family to understand your exhaustion

I was diagnosed with PA a few months ago and have had my loading doses and am now on my first 12 week waiting period till my first regular injection. I am a mum with 4 children aged between 5 and 12 and I am really struggling with fatigue. I feel wiped out so much of the time.

My husband really gets annoyed at me being so tired all the time and why I seem so down. He is a huge shopper and loves nothing better than days out walking around shops for hours and hours on end, I just literally am unable to manage this anymore and have been trying to keep doing this for his sake but he gets angry at me when I tire when we are out and says I'm grumpy but my legs feel like jelly.

He also has a tendency to leave much of the work in our home to me, raising the children, taking them to clubs and school, day to day cooking, washing, cleaning, shopping all is my area. He suffers from severe gastric reflux himself and I do try and understand his condition and help him out with rest and extra time to cope with his condition but he doesn't seem to understand mine. I literally am the one up each day with the kids whilst he says his condition means he can't sleep so he stays in bed sometimes till one or two in the afternoon.

How can I help him to better understand as he says now I've had my loading doses I should be "better" and he doesn't seem to understand that I may never feel back to normal.

9 Replies

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  • you could try starting with this

    pernicious-anaemia-society....

    is it possible that your husband is also suffering from B12 deficiency?

  • I have been reading up on how his medications could be causing him to suffer from it too and have asked him to see if the doctor would do a test for him.

  • Just wanted to say I feel for you, I have 4 children aged 2-8 years old, I'm so exhausted and I have just finished my loading doses and not felt any better, if anything worse. My husband tries to understand and help as much as heh can but he works so much of the housework and childcare is down to me, I'm really hoping to feel better soon, but I feel I'm constantly telling family members it's not an overnight thing and could take a while before I feel any sort of normal. Hope you feel better soon xxx

  • It must be even harder with little ones under 5, at least when my children are at school I can try and catch my breath, my admiration goes out to you. I think the perception is the loading doses will make everything okay and it's hard to explain they are not a magic potion

  • Hi lillyalaine23 Firstly can I say that it is still very early days in your treatment and sadly it is not uncommon for some symptoms to appear to get worse before they get better. However the B12 you are having injected will in time repair damage done to your nerve ending but a lot will depend on how severe that damage is. Some symptoms will improve sooner than others so a good idea is to make a list and score them daily from one to ten on their severity or otherwise. Maybe get your husband to do the entries from what you tell him and he will be able to see for himself any improvements - or otherwise

    Secondly do you know what your Folate level is and does your doctor know that you are still struggling? It may well be that you need to have continued with the loading doses for a longer period. Ask him/her to check the N.I.C.E. Guidelines for the treatment of Vitamin B12 Deficiency where it says that for patients with neurological involvement, injections should be given every 8 weeks and not the 12 you are scheduled to have.

    google.co.uk/url?sa=t&rct=j...

    Click on the link above, then on "Scenario: Management" and scroll down.

    I am so sorry about your "unsympathetic" husband but you can tell him that there is "life after P.A." as there are many thousands of us who "suffer" from it and are able to live near ordinary lives as long as we continue with the injections for the rest of our lives. Perhaps you could even shock him by telling him to look up the meaning of the word "Pernicious". You may never fully get back the energy levels you once had but surely he would rather have you alive than dead.

    I'm sorry if that sounds overly dramatic but it is not right that your husband "lives in ignorance" of what P.A. is all about. Gambit62 suggested you join the Pernicious Anaemia Society where you will find "loads" of helpful articles for both yourself and your husband.

    I am not a medically trained person but I was diagnosed with P.A. at the age of 30. At the time I had a very sick wife with an infected and damaged heart valve due to rheumatic fever and two children under six. My doctor told me that the "bad news" was that I had two years to live. When I asked what the "good news" was she said you won't die within two years as long as you eat raw liver three times a day or have B12 injections for the rest of your life. Needless to say more than 45 years later I'm still having the injections.

    I lived for nearly forty years in total and utter ignorance of what it was all about as I never knew anyone else with P.A and neither the succession of nurses who gave me my injections or doctors I saw on occasion down through the years ever asked me how I was getting on with with it until six years ago I joined the PASoc and discovered that I was "not alone"

    Ignorance is not bliss.

    Sadly my wife died 25 years ago but I'm still "clivealive" at over 75.

    I wish you well and hope and pray that your husband will become more understanding very soon.

  • Hmm.. I can't offer any advice because, unfortunately your situation mirrors mine. My hubby usually has a nap after tea, when everything has been done, by me! He has also severe gastric reflux and has taken double the dose that I did take, until I realised that I had low stomach acid.

    He has counted, out loud, how many yawns I have in a day! This I presume is 'the sighs' that some people have with B12 deficiency.

    So believe me, I can totally sympathise with you. Luckily our children are teenagers now. I do remember when they were younger when he had to wake me when I had been reading bedtime stories to them with a look of disgust about him because I had fell asleep AGAIN!

    Anyway, I hope he will understand soon with the advice you have beengiven, as I will be using it too!

    Goodnight, from 'the laziest mother EVER!'' x

  • Also, it's playing on my mind now, some people are carers and some like to receive the care. My hubby has has always received my care for one thing or another. I also cared for his mother and father, but when I need some care he can't handle it! I've always been the one to care for the sudden poorly child, at home or in hospital. I think it's out of his comfort zone to actually care for me! Rant over now. ☺

  • So very sorry - how awful for you. And it makes me realise how very lucky I am with my husband. I've resorted to self-injecting, as the 12 week wait is ridiculous and isn't going to cure the symptoms. I've started doing it every other day, and progress is slow but steady. Perhaps you could consider this? All the best of luck - I don't know how you must be coping, and feel huge sympathy for your predicament. Big hugs to you xxx

  • It sounds like your husband is not very receptive to finding out about your condition, but unfortunately, that is the only way he will be able to understand what you are coping with. Maybe ask him to read some of the posts which come up on this forum. It may make him realise that you are coping admirably with such a debilitating condition and that if you don't listen to your body and pace yourself until things improve, your symptoms could become a lot more severe.

    You don't say what your other symptoms are, but, as previously suggested, it would be useful to review the standard treatment you are getting, in light of your full symptoms, as you may need to have further loading doses and more frequent regular injections.

    For some people the loading doses are very effective, and they see almost instant improvement, but for others of us there seems to be a need for a more aggressive approach. I had the loading doses in April and waited to "get better" but what happened was my symptoms worsened and I have now been referred to a neurologist.

    It always puts a strain on a relationship when one partner is ill, but makes so much difference when there is loving support from the other. Unfortunately, most of the symptoms of B12 deficiency are unseen and some, like anxiety and depression can be misunderstood as "it's all in the mind".

    I wish you and your husband well and hope you receive the right treatment and he comes to understand the condition.

    All the very best.

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