Feeling alone: I am 67yo, I have... - Pernicious Anaemi...

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Feeling alone

sasserp47
sasserp47
30 Replies

I am 67yo, I have inflammatory arthritis, COPD, I am severely hard of hearing, and now I have been diagnosed with B12 deficiency. With the overwhelming fatigue and the addition of some neurological symptoms, weakness in my legs and having to use a walker to walk more than a block. I have been sad, anxious, and at on point wondering, " Why am I here?" I have autoimmune issues that are a nightmare to get answers about, my CRP is always twice what it should be, and I have a 94 yo father who has better kidney function than I do. What I am finding out is that the road to get back to some kind of normal life is a wait and see, everyday is different. I come from a family that does not deal with sickness well, they would rather ignore it than give you support and let you talk about it. I have one really close friend, but she lives in a town 60 miles away. We try to meet for dinner once a month, but we usually end up going to a place that is very noisy, because it has to be somewhere that serve drinks, and with the noise, I am not able to hear much of the conversation. We have been meeting less and less and I do not blame her for not wanting to meet me, as it can't be much fun for her. She has a lot of other friends to go places with so she has lots to do and she is healthy, we are the same age. I can't volunteer at something where there are a lot of people, because I am severely immunocompromised due to having IgA deficiency and taking low dose prednisone. I cannot hear on the telephone so volunteering has been hard to find something I can do. I am sure there are others of you that have a similar problem. I am a woman of faith an if this is God's will then I must accept it, I know their are so many other's with worse problems and I feel guilty when I think of them. Well this has gone on far too long and if anyone is still reading, I thank you for allowing me to let it all out, because I rarely have a chance to do that.

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Mannequin18

Hi, I'm sorry you feel alone and unwell.

If you have only just started on your B12 ( I assume injections), then you should start to feel better, and more able to cope.

There is a lot of support and information on here.

I wish you well, good luck.

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sasserp47

Thank you. There is a lot of information on this website and it has been a God sent to me. Everyone has been so kind to me. I am started on B12 shots and have had some better days, so you are right, I must look forward, it's just that added to my other problems it will take me some time to adjust to this new one, but as I said, I have seen some better days so I am hopeful. Thank you for bringing me a ray of sunshine with your caring and support.

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Mannequin18

You're welcome, and take care.

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Chittock
Chittock
in reply to sasserp47

I live near Cardiff and you are the same as me with walking, but there is nothing wrong with my talking . If you want someone to chat to we must get in touch. I get very depressed myself but we would probably find something to laugh about, Be brave and think about self injecting like a lot of us do. Best of luck xx

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sasserp47
sasserp47
in reply to Chittock

I live in the United States, in Wisconsin. I am not sure where Cardiff is, but I would love to chat with you! It would be nice if we could write to one another. It is so easy to get depressed when you feel so bad all the time. I am hoping that my doctor will be liberal with my shots if they do not last and my symptoms return before I am due for another shot. I may consider self injection if I am able to get the B12. I am serious about us writing to each other. I wish you the best of luck also.

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wedgewood

Please don’t think it is God”s will that you are so unwell. He would not want you to suffer .

I’m really sorry to hear of your illnesses . You tell us that you have B12 deficiency . Well the commonest cause for that is Pernicious Anaemia , but it is difficult to get a diagnosis , because the test tor it ( called Intrinsic Factor Antibodies Test -IFAB ) is very unreliable if it comes up negative, which happens often . The doctors then think that you don’t have PA. then . You may well have PA , assuming you are not a vegan , strict vegetarian ,, had bariatric surgery, have been taking stomach acid depressants for some time e.g.Proton Pump Inhibitors —PPIs, or have fish tape worm .

Lack of Vitamin B12,causes many many symptoms . Especially the feeling of exhaustion , it can affect hearing and sight , prevents the red blood cells from maturing causing breathless ness . I could go on and on . Do look the symptoms up on Google . You won’t have every one , just a nice pick and mix selection .

You must get your B12 deficiency corrected . If you have PA , then you will need B12 injections for life , at intervals that keep the symptoms at bay . ( not always easy to get , that’s why I have to self inject as I need them more often than the doctors will allow for ) If you have PA , then tablets will not be helpful . , as you then cannot absorb B12 in your stomach .

I wish you all the best in getting your B12 deficiency corrected . But it isn’t always straightforward, because some doctors have very poor knowledge of it . Best wishes .

Hope I’ve helped a little . There are people on this forum who are more knowledgeable then I am .

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sasserp47
sasserp47
in reply to wedgewood

Your knowledge has been very helpful, but most of all you support, kindness, and caring have helped me more than you will ever know. Thank you.

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wedgewood
wedgewood
in reply to sasserp47

You cannot imagine how lovely it was to hear that . I haven’t huge knowledge , but I had a bad time with doctors when trying to get an accurate diagnosis , and the correct treatment for what turned out to be Pernicious Anaemia . I didn’t know about PAS then . There are some wonderful people on here with great knowledge. Just keep us informed about how you are progressing , and tell us about any difficulties you come up against .

Pernicious Anaemia is an auto-immune condition , and it seldom comes alone . A quite common “companion “ is a thyroid problem . But there are others ( I have a bit of Rheumatoid Arthritis )

I didn’t realise that you were in the US . I don’t know anything about the health care system there . Maybe it’s better than U.K. . ...

Whatever—- you will always find support here .

Very best wishes .

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Sleepybunny

Hi,

I'm sorry to read that life is hard for you.

Are there any support groups you could go to;especially ones that can support those who are hard of hearing?

Have you considered talking to Samaritans and maybe your local church minister if they are understanding?

You mention that you have IgA deficiency. Were you ever checked for Coeliac disease (spelt Celiac in US)?

People with IgA deficiency will test negative on typical Coeliac test (tTG IgA test)and different Coeliac tests will be needed.

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

B12 deficiency can have a profound effect on mental health so you may find that with enough B12 you feel more positive.

B12 Deficiency and Mental Health

b12deficiency.info/b12-and-...

martynhooper.com/2017/01/22...

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sasserp47

As always, you are a wealth of information. Unfortunately in the US and in the city I live in there are few support groups where you can actually talk with people face to face. Everything is through the internet, but that is the future, less face to face and more through technology, which does have it's good points. I would not be able to have gotten on this web site and met you and so many lovely people. I have ordered Martyn Hooper's book and can't wait till it gets here. I am an avid reader and being my prognosis is that I will be deaf by the time I am 70, I must take very good care of my eyes for I would be lost without being able to read. Thank you again for your support and kindness. I guess I was feeling alittle overwhelmed and just had to let it all out. It does help.

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Skylane2

I’m so sorry you are going through so much. It’s hard when your family doesn’t understand. I know that more than anyone . I have several autoimmune diseases too. I’ve had lung cancer and breast cancer and a benign brain tumor surgery. I have Hasimotos ( low thyroid) and high blood ipressure since my hysterectomy when I was 42. I’m 80 now and I can hear just fine but I am bothered that you are loosing your hearing. Could you and your friend send cards back and forth so you can stay close? Also is there a Bible study group you could join? Is is possible to take a sign language course? Be very careful when you are walking (although it’s good for you,) if you can’t hear a car coming , YIKES! God has us here for a reason. You said you are a woman of faith,and that’ is a very good reasons for living. There are so few of us left. So I will be praying for you. Meanwhile, Rejoice in the Lord always. Sing! And talk to Jesus. He loves you so very much, ✝️MARY

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sasserp47
sasserp47
in reply to Skylane2

You are such a dear woman, thank you for your caring and support, they mean so much! I talk with Jesus a lot, he is my rock and salvation. When I read the Bible and other articles of faith it is so reassuring and makes me feel so much peace. I have found out about a Bible study that I would like to attend, so I will check that out, I think it would be very good to be among others of faith. I am taking a speech reading therapy, learning to read lips, it takes much practice, but if you stick with it it does help. I know I am here to help others, but as the illness's mount up I am feeling a bit overwhelmed, but talking to all of you is very helpful. I wish we could meet, Mary, I know we would become fast friends, I thank God for sending you to me.

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Nackapan

Being deaf is very isolating as is illness.

I hope the b12 injections make some difference for you.

I'm really fed up of daily struggles and not being able to get out much.

I can't speak on the phone as noise sensitive. My own voice gives me head pain.

Hope you ride the wave of feeling down and rise up again soon. I find what app good for trying to keep up with friends.

I used to be out all the time

You've many health problems to deal with. Someone is always worse off but that doesn't help you.

I really hope you get a spark of light soon.

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sasserp47
sasserp47
in reply to Nackapan

Thank you Nackapan, you have helped me before and I understand your frustrations with not being as active as before. I too used to be on the go all the time, I enjoyed my life so much so I must be thankful for that, I have many wonderful memories. I just didn't think I would become so sick, so soon, but as you said, there are many that are sick so much younger. It's just that I seem to become accepting of my life and am finding ways around all the disabilities and then I get diagnosed with something else. Hard to take, you know that. I won't give up, I'm still in a tailspin over the B12 and learning the ins and outs of it. I have been blessed with many spots of light, and I guess we must also accept the periods of dark also. I thank you for your kindness and support, this website is a spot of light.

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expatkerry

Sorry you're feeling so isolated, a lot of people here can empathise with you on that. I would like to say that prior B12 injections the depression associated with B12 deficiency was much worse. When your treatment kicks in things won't seem so bleak. You say you have faith and you have accepted your situation. I think this helps enormously because when you have faith you are never really alone and acceptance (which I have only managed recently after going through denial, anger etc) puts us in a calmer frame of mind. I actually believe that once you are in this frame of mind some improvement can take place, if only because constant agitation is bad for your health. I work on deep breathing and meditation (prayer is not so far from this). Airing your feelings is great too, so your post here is another step in the right direction. Concentrate on the little improvements and distract yourself from the overwhelming aspects of poor health. I wish you well.

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sasserp47

Thank you expatkerry, for your encouragement and your support. I too agree that with each illness I have gone through the stages of grieving until we reach acceptance, and hopefully a more positive outlook. This website has been wonderful for me. It certainly makes me feel less alone being able to express myself to others that truely do understand and they are going through much the same thing, and being able to vent my frustrations takes much of the feeling of being overwhelmed away. Thank you for your patience and understanding. I wish you all the best.

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kmsbc

I am saddened to read your story as I know that even with people around, anyone can feel lonely so it must be awful for you. I don't have any suggestions that haven't already been mentioned but just wanted to back up what others have said about there always being people on this group who understand and can support you with your B12 issues. I'm 37 and fortunate that low B12 is all I suffer with but still I struggled to get people to understand and lost a partner along the way as I couldnt face going places I used to and doing the same things and felt upset and down a lot of the time. The reason I say this is that the injections have got me pretty much back to normal (I self inject once per week currently) so there is every chance you get on top of your B12 issues and hopefully find a lot of your symptoms improve, giving you a lot less to worry about, best of luck 😊

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sasserp47
sasserp47
in reply to kmsbc

Thank you so much kmsbc. Your support meets so much to me, and your telling me that the shots did help you improve helps me put this all in perspective and I just have to give some more time. I am so grateful for kind people like you.

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pitney

So sorry that you are feeling so alone at the moment, I know that feeling of having so many symptoms that it leaves you feeling lost and panic stricken and just when you need your friends around they seem to struggle to understand where you are coming from. Have you talked to anyone at your Church about your feeling of isolation ? there may be others there who feel the same way and you never know you may be able to start your own support group with their help and grow a whole new group of friends:)

I really hope that with your treatment you start to feel a little better soon and that you manage to continue to meet up with your friend once a month

All best wishes and good luck

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sasserp47
sasserp47
in reply to pitney

Thank you, you are very kind, and I appreciate your support and encouragement. I am starting to go to a bible study from church and there are some very nice and friendly people there so I am hopeful of making some new friends too.

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Hanneke12

Dear you, I hope you will feel better soon! Please know that B12-deficiency does this to you, the feeling hopeless... I had that 'why am I here?' feeling, too, and within a few months of biweekly B12-injections I feel wat more energetic, and happy and content with my life again. So please hang on! xx

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sasserp47
sasserp47
in reply to Hanneke12

Thank you Hanneke12. All of your support and knowledge is helping me see that I can be hopeful for a better future and that means so much.

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Holly333

Hello, l’m so sorry you’re having such a hard time and l wanted to just say you are not alone., it’s very hard trying to cope with ongoing health issues and you have a lot to cope with, so be proud of yourself for doing your best. You seem like a lovely lady battling to stay positive and it’s not easy. I also have family that don’t deal well with illness and a husband who doesn’t deal with illness, emotions or communicating at all so l know how isolating and sometimes frightening it can be trying to cope but stay positive. This is such a wonderful place to share what you’re going through because it’s like a secret place of support, knowledge, understanding and kindness at low times when it means so much just to hear from someone who might understand. I too have days when l would never admit to my family how low l feel and l hide it well but l take strength from the positivity, kindness and vast amount of knowledge that others take the time to share on here and it helps you stay positive and gets you through another day. You are right, we do live in an increasingly digital world but it also means that you can reach out to people you’ve never met, on the the other side of the world, just to offer some support or to say someone does care about you. There are some truly kind people on this site and l hope you will feel a little less on your own coping. Others on here have got loads of knowledge and advice on your health issues so I’m just sending you a big hug, stay strong, l hope you have a better day, Holly x

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sasserp47
sasserp47
in reply to Holly333

Thank you Holly333. You are so right about this website. I have received so much caring and support in just acouple days, and I am learning valuable information about B12 deficiency. Another thing you are right about is people taking the time to help someone who is struggling. You did that and it means the world to me. I wish you all the best and I am sending a hug back to you, hoping you too will stay strong.

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Holly333
Holly333
in reply to sasserp47

Thankyou, I am just so pleased you feel a bit lifted today and really hope you can use the health info from others to get a bit better. It’s a lonely and scary battle sometimes but this is such an amazing site with people who really do understand how complicated and overwhelming it is to cope with on a daily basis. It’s good to remember theres always lots of support, advice, info and virtual hugs on here when you need it. Xxx

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sasserp47
sasserp47
in reply to Holly333

God bless you Holly 333, you are such a wonderful person.

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MoKayD

Hi, I'm here in the US too. I was 57 when I diagnosed myself with B12 deficiency. I felt so depressed and incredibly tired all of the time. I could barely walk up a flight of stairs and I fell asleep immediately after dinner every night. Previously I was always on the move. I seriously thought I was dying. After my very first B12 shot I felt a jolt of energy which I hadn't felt for a long time. It gave me hope that maybe I could feel better, maybe this wasn't how I would feel the rest of my life. It's been 2 years of treatment now and, while there have been ups and downs, I feel so much better. I can hardly believe the difference between my health two years ago and now. My advice is get your shots and get them as often as you feel you need them. Try to think positively in spite of the darkness surrounding you now. You will get better. Find a good church to attend. My friends at church kept me going during my darkest days. Seeing a therapist is also a good idea. Everyone could use a therapist at one time or another during their lives.

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sasserp47
sasserp47
in reply to MoKayD

You are so right McKayD. After my first shot, I had to of the best days I have had in years, so there is hope. This website is a beacon of light in my darkness. Thank you McKayD, for taking the time to care and help a struggling co member. I am going to bible study now and it is helpful to be getting out again and starting to feel like the old me. My very best to you and God bless you.

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Litatamon

Hi sasswep47,

Well it is already apparent that you are a strong woman. Only a strong woman would sit fully in her vulnerability, be honest about the struggle and reach out.

I am so very sorry that you are going through so much. And that you feel isolated.

I hear that you would like to do some volunteer work, but it must be a quieter environment. Do your arms feel secure and strong? And if they don't now, maybe they will with more shots. What about volunteering to sit in a rocking chair and rock babies at the hospital? You're sitting. And it would be a quiet environment. Forgive me if I am missing some relevant information about your health needs. I read very quickly - smiling.

I was happy to read you felt the jolt on your first shot. I did too. And all those professionals who think the reaction is a placebo. Sigh.

Whatever!

Anyway, I too am so grateful for this site. Wish you the best and hope you see improvements day by day.

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sasserp47

Thank you Litamon. I hope that someday I feel like the strong women I once was. I had a taste of it after my first shot, it didn't last long but it was unbelievable, it gave me the first hope I have had in a long, long time. Right now I am weak, but I do believe I will be strong enough to rock a few newborns again. This is an awesome site, it's even managing to teach me patience. LOL

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