Has anyone's relationships suffered with this illness. I'm very hard to be around as at times in snappy, angry or just scared about the future. It's hard being at the beginning of this and having a somewhat 'normal' feeling day after injection and then by the second night feeling the horrendous symptoms creeping back. Why do I have an injection and think in my mind 'oh I'm back to normal maybe I won't ever need an injection again'. It's all like a horrible nightmare. I did some housework and went out shopping for no more than an hour and feel awful again.
No one can ever know how terrible deficiency is until they experience it themselves, is this the endgame when you can't go without it or you feel like your dying,like your systems area shutting down. My brain function and heart just seem to decline rapidly. Am I reliant on this forevermore? I never got a Pa diagnosis so I'm self injecting and trying to get through a day at a time, that in itself is alienating. Doctor doesn't want to know, said he would refer me to gastro but hasn't happened yet. Family member thinks it's all in my head and if they knew I was self injecting.. I wouldn't even like to let them know. Marriage is taking a hit as I hear myself talking and I think how boring am I, B12 B12 B12 all I seem to talk about last few weeks it's took over my life as I get to grips with S I and research the very complicated causes of deficiency, trying blindly to guess at my own specific cause (something gastrointestinal).
I think I may have been deficient for 20 years, why did it take so long to go into full force heart problems and neurological problems? Sorry just rambling on now, if anyone with this lives in Liverpool please let me know I would love to have a friend to meet up with who knows what this b12 thing is like
I feel your pain. I'm so snappy too. The feelings when it's wearing off are horrendous, worse than not having had it.. I've halved the dose and starting SI daily to reduce the withdrawal effect and it has helped
I may inject today again as I think I overdone it Thursday and friday and had to pay for it. It's hard not to want to get on with things while you feel well, seems to be a very fine balance that I haven't got yet
I’m so sorry to hear what you’re going through. I’m lucky, I have a sympathetic partner…even if she didn’t really understand what I was going through. I would warn her that I was getting angry and she wouldn’t understand why even though I would tell her it was nothing to do with her, just the chemicals in my body telling me to get angry. I would have to hide in a dark room during the day, I’d get tired walking up the stairs and I felt like I was getting old over night. I now SI weekly which seems to be enough to reduce, though not completely eliminate the symptoms. How often are you injecting? I haven’t told the doctors as I had an argument with them about needing injections more than once every 12 weeks and I don’t want to now be labelled a trouble maker but my family know and I think my willingness to self inject maybe emphasised how seriously I was impacted by the condition.
I wouldn’t worry too much about the cause of your deficiency. The test for PA is not accurate so a negative test doesn’t mean you don’t have it but unless your diet is poor, if you are low it means you’re not absorbing it and the outcome is the same… you need injections. The only question is, how often.
There are so many out here going through exactly what you are going through and the worst of it is you look normal so they don’t believe you are that ill. You’re doing the right thing reaching out to people. There are videos to watch and shoe your family but hopefully you can find some support from someone local.
Thank you yes I just feel so old at 34 and my husband is 32 so I just feel guilty, what a life he has got with me now. I've tried explaining about the snappiness and sometimes when I'm bad it takes a while to comprehend what someone is saying so my reaction is delayed so when someone is getting annoyed with that it makes you annoyed. It's definitely an absorption issue over 20 years, my stomach is swollen and inflamed every time I eat, hair and tooth enamel loss, consistently low iron. I'm injecting every 2 days but only started couple weeks ago. Had 6 spaced too far apart in salons et c before that as doctor literally left me to die, couldn't speak properly, dementia symptoms dropping things couldn't figure out basic tasks.hard to walk as my heart was so bad id have to sit down walking from one room to another and the dizziness was non stop of be walking into things. Had to start to SI as couldn't afford the £30 they were charging me in salons
Hi Rachael 7000, You can buy your B12 from Germany for less than a dollar an ampule. For me in the United States it costs me about $1.40 because my shipping is so expensive. But it's much cheaper for people in the UK because shipping is free. You don't have to go to a salon. You could just buy your own B12 and you can learn how to self inject. It's really not as hard as anybody thinks. It's a little scary at first for some but the next thing you know you're going to be a pro at it. And you're going to feel so empowered because you can inject anytime you start feeling upset. You can't OD on B12. You could inject every day if you need to. You'll know what you need to do. Your body will tell you. There's tons of posts here about where to buy your B12. If you go to the German websites you have to right click and say translate to English.
Right now hydroxycopalamin seems to be difficult to get so cyanocobalamin is the next available B12 and that seems to be easier to get. You'll want to get the 1ml ampoules and 2ml syringes. Needle size matters too. I like a smaller diabetic needle.
There are different brands of B12. There's Hervert, panpharma and some others. I've had the two that I mentioned. Right now I have a year's supply of B12. It's quite a relief to know that I have all that. It really gives you a lot of comfort.
If you can inject yourself, you will have less emotional issues. For me my emotions are the first thing to go downhill if I don't have enough B12.
Hi yes I am doing that now got the Pascoe brand from versandapo, salons were just where I started before I found this website and got lots of S I info. I m injecting every 2 days but think I'm going to inject today as well as I overdone it Thursday and friday so a daily might be better while things are busy
Well done on starting self injections but don't get too despondent. The deficiency makes you feel flat but the B12 starts working straight away. Sometimes though you can actually feel worse as your body is busy trying to repair the damage. It can take a while for you to feel better but even two years later I was still noticing symptoms improving. I had the strange experience of feeling younger as time was going by.
Yes I experienced a bit of that like woah energy this is a new feeling! Just need to learn to pace myself and know my limitations, not very good at that at the best of times!
Ah ha - very early days in your recovery.The good thing is that you are recovering enough to be able to see it now, whereas a few weeks ago it was all just a fog.
Don't panic - you'll get there!
It takes ages in some respects to have children but they grow up before you notice and getting better from this will be a bit like that.
Focus on every improvement you make - like your increasing awareness - and celebrate each one.
Thank you , they are growing so fast too fast the days just fly by. I was even considering another baby before all this but I suppose it wasn't meant it be.My body is not strong enough and it would be silly now given the circumstances. I was so healthy in pregnancy which is odd, I've never felt so good as I did in pregnancy
Yep, the b12 rage is hard. Lost an amazing person as she thought I was angry and not right.
I have also suffered for decades with b12d, without doubt I have neurological damage. I am very calm and laid back but I used to explode all the time, even at little things. I hated being in traffic etc. It felt like I had no control and would just get really angry, it was like someone took over me. I used to calm down fast but it must have been horrendous to deal with. I also used to worry about things constantly and could not sleep, mainly as my mind would just be going over and over things in my head.
I have been injecting daily for 2.5 years, as well as spending hundreds of hours researching diet, supplements and how best to help my gut and body heal. Without doubt this illness changes you completely, and it is impossible for others to understand.
I am better now, and things only bother me for 24 hours now, but the b12 rage is still with me. Although much much better.
This illness is horrific and anyone suffering it has my sympathy.
Sorry to hear that Phil I'm glad things have gotten better for you. It's the snappiness that is the worst for me compounded with guilt that instead of making me kinder makes me snappier ! I do feel my personality has changed,I had a silly sense of humour and I'm just a deflated balloon now. Knowing you are doing better gives me hope. Just need to get a handle on how much activity I can do, when I develops after the shot in trying to live 'normally' and then just crash. Not doing the shot in the morning when felt symptoms and waiting until the night completely wiped me out and put me back to square one. Suppose it's all trial and error because I'm at the beginning of this all after getting drastically ill back in October. Thanks for the reply
With PA lack of absorption is an issue, hence need to inject daily. I had shoulder, back and knee injuries that never healed despite years of physio. But three months after daily b12, all gone. I am nearly 50 yet my body heals like it did when I was 18. Although, I supplement and eat the most strict organic diet. Which I think helps. I have also researched lymes and parasites and understand and know I have them.
Wow great, yes mine is absorption I know that for sure and I've also had organic healthy diet for over 10 years to help manage symptoms of another autoimmune diagnosis I had. It's probably what's kept me going as I've been deficient for so long and attributed the exhaustion to the other condition
Thanks Nackapan, yes I find myself just wanting to be alone and be quiet as sometimes the effort to think and respond is difficult. I manage to get my kids to their activities through the week and teach them (they are only 5 and 7 so my brain can manage that as felt like my IQ has plummeted since this has happened) but when my husband is home I just want him to take over and obviuosly thats not fair. We'll figure it out, hope you have a good day tomorrow
So know what you mean about wanting to be alone and quiet when it all gets too much - and that's even after 7+ years of improvements and being a very friendly person who likes company!Don't be hard on yourself. x
I get it with IQ as well. I was super fast mentally, outstanding general knowledge and memory. Could recite hundreds of psychology studies back and work at super fast levels to a total vegetable.
I get it, was quite an abstract thinker loved reading and just naturally liked to research and study all kinds of things.May I say I was even a little bit proud that I had 'critical thinking' skills that I didn't see with a lot of other people. Well God certainly has a way of humbling me if I'm ever proud and I am well and truly humbled as I too at times feel like a vegetable. For years I was telling people I had baby brain and then I realised I had my last child over 5 years ago! Was definitely losing mental ability over about 6 years I'd say
You better zip it then haha! No I get you but I think more and more people are reconsidering things, it's very hard coming into the realisation of what's going on around us, I really feel for people who are so trusting and it's to their detriment. Life has become very hard for a lot of people as they see the madness going on around them
I developed dementia symptoms in my late thirties. I remember crying in front of a very unfeeling neurologist saying I was scared I had early onset dementia.
The loss of "self" is probably the hardest thing of all to cope with. I actually went through a grieving process for myself.I keep sorting out one problem and looking forward and then another crops up and I'm floored and back to fighting again and I honestly don't know who I am, or am likely to be able to be, next.
It plays havoc with managing my expectations for mental stability!
No I get it, my husband has registered my eldest on the waiting list for local schools, I'll put it all in God's hands as I know schools are striking at the moment here in Uk and I'm sure there is more upheaval coming in society at large. The homeschooling is the easiest part it's more the upkeep of the home I struggle with as we don't eat packaged easy foods everything has to be cooked and made from scratch and there's the dishes, the mounds of washing and the tidying up as the kids are at home so I tidy a room and 20 minutes later there's Lego all over the floor or hamster nuggets,someone has dropped a glass, someone can't find their favourite pencil that they must have before they do their work no other pencil will do, etc etc
Its a privilege and I love it but I suppose it's sort of a hard life for most people to comprehend, never having time away from my children but I've considered getting help as well. Someone to take them for an afternoon but also tutor them as I don't want them just to be babysat as it were.
Thankyou and the batch cooking is a good idea, I'm currently reorganizing their rooms putting labels on cupboards and drawers so they can pick up and put away after themselves in the right places. Also putting art and crafts out of their reach so they don't go and help themselves and I find sequins or card cut up all over the floor. they are doing well work wise as that's one thing I refused to let slip throughout this, my kitchen may be a mess, I may be a mess but the schoolwork is done ! Just redjusting to things , this all began in October so trying to find a balance. I'm not used to time to myself I suppose I have to be "doing" in order to feel worthy and when people see how clever my children are.. that's what gives me the greatest pleasure, to hand that over to someone else is going to kill me. I'm hoping SI will enable me to continue but if it doesn't end up working out I will have to find a new system
It was not just my rage, I had been getting progressively very poorly, she was significantly younger than me and probably (rightly) thought she would get stuck with a total medical write off. I had 20 visits to doctors in one year who just told me stress then anxiety. After four bloods tests nothing mentioned about my b12 which was low, my low folate and ferritin below 50 which is a huge concern.
I left a job I loved and was spectacularly good at as I thought I had stress, turns out b12, parasites and bad gut health.
Personality has changed for the good, health has been total turnaround. I still suffer from brain fog but huge benefits. But, I spent three years of my life educating myself about medicine, health etc
I'm sorry you went through all that Phil. It's a familiar story for sure. Sorry you lost so much. I definitely know how that feels. I'm so glad that years later you're finding relief and that your personality has changed for the better. Mine has too. And at least I know that when I'm like that if I'm super tired, I know to stay away from people and to just go to bed. At least we know what it is now.
Your strong Phil, the right person will come along but I definitely get that worthless feeling you feel in relation to being with someone 'normal' and not being able to have the life you thought you was going to have, having to change career paths etc. You've definitely come out of that helpless hopeless place and seemed to have took a lot of lessons from it. God bless you for that
I went from an award winning teacher and manager engaged to an amazing lady, planning a wedding and children, with an amazing future. To an absolute invalid suffering the unbearable torture of reversing out syndrome, which was a physical and mental attack like nothing I thought was possible. All lonely as hell, slightly heartbroken and questioning everything.
Terrible Phil just terrible I really empathise with you it's just sh*t it really is, it robs you of your life. But you do have a future, it may not be what you planned but that just wasn't meant to be. Who knows what's waiting round the corner, as long as you carry on the way you have been there's good coming. You haven't sat down and given up and that shows your character, not many people could deal with things in the way you have
I am so pleased to see that Treesong2023 has replied to you.
Many of us have felt the same despair as your going through. It seems the only others who understand this curse of an illness is others who are going throughthe same misery.
It can make us feel very isolated. At times we grieve for what we once where but albeit a long journey hopefully a bit of that former self will return.
Hi Rachel, Yes, all of the above. I get angry, grumpy, fussy. I snap, I bark, and sometimes I just completely withdraw and they wonder where I have gone. None of it is, meant to be, or on purpose, and oh geez I have to apologize often. Someone once told me early on when I asked what they do when everyone looks at you and see's a normal healthy looking person on the outside but on the inside what they don't see, is this great turmoil and uncertainty that you've kept hidden. That only bubbles to the surface when you snap. She told me simply "communicate, communicate, communicate" let your partner, children, family know that it is not you and mostly you are seemingly not in control. The very hardest thing in the world for me to do was to finally sit my kids down, they are grown, and tell them they could no longer rely on me. I'm really not sure which was harder, telling myself I could not rely on me, or telling them. But I did that and explained the illness to them. Afterwards I think the understanding has helped. I still have to apologize often when I catch myself though.
Thank you So much, yes it's very hard for me as I'm used to doing everything alone as that's just my curcumstances and now I can't and I can't stand it. I home-school my children and now my husband has had to register my eldest who is 7 into school so I feel a complete failure and have lost my purpose and my life as I knew it. My husband is too young for this I feel like I'm robbing him. I literally don't have anyone to help only him and it's too much to ask of him. Who wants to come home from work and make food for everyone? And be snapped at, just taking it all a day at a time that's all I can do just never thought I'd be in this position at 34
Awww Rachael7000 I'm sending your a big hug. You sure sounds like you need a good hug and a good cry. I'm really very sorry that you have family members doubting you and telling you it's all in your head. I'm going to tell you 100%, it is not in your head. And I'm very sorry but yes you do have to inject B12 for the rest of your life. It is a very hard thing to wrap your head around at first. You feel like you're in a nightmare and you're going to wake up and this just isn't so. But it is very real and it is very so. You don't have to have pernicious anemia to have neurological B12 symptoms.
You're seeking out help for yourself because something's wrong with you. That is very real. You wouldn't be looking to treat yourself if you didn't feel as bad as you do. You're also very aware of your attitude and your temper and your emotions. Those are all things that suffer terribly from B12D. B12d definitely takes its toll on relationships. For me personally I've pushed a lot of people away. It's easier to stay by myself so that I don't say things that hurt somebody and so that I can actually be free to feel terrible if I do. It's very hard to put on a smile and pretend nothing's wrong for other people when you feel absolutely horrible. So it's easier for me to stay by myself so that I can be free to be miserable if I am or be happy if I am and not have to worry about how somebody else feels. It's hard enough worrying about how I feel. I don't have children so I don't have to worry about that. But other people do and they Have to function and be around other people all day long. I find that the more B12 I have the better I am. I don't know how often you get injections, but it could very well be that you need them everyday. You may only need them once a week but if you're not feeling good and you start to feel bad before your next injection then you need more.
It is a very lonely condition to have. That's why we're all here because we know how it is. And we all need support. You're not going to find it much from a doctor and you're not going to find it from family members or other people who don't know anything about it. And it does become our entire life. Every thought everything we do everything we say everything we read is about B12D. Because we are trying so desperately to help ourselves. And It's such a crazy condition was so many symptoms that you can't help but see it everywhere you turn. You listen to somebody and you think oh my gosh this person has B12D. You look at somebody who's prematurely gray and you wonder does this person have B12D. You listen to somebody who says that they forget things and they're having trouble finding their words or that their legs are really weak and their feet are tingly and you think this person has B12D. And then you find out more and more about this terrible condition and all you want to do is help somebody else who might have it too. It consumes your every minute of every day. In the beginning. Eventually you do start getting your life back. But I'm 10 months into it and it's still consumes every minute of my day. However I have been painting little pictures and trying to go out and take pictures. And do things that get my mind off of it. It sounds like you're in a position to wear your doctor isn't even sure of how bad of B12D you have but it doesn't matter You have B12 deficiency whether it's PA or not the treatment is the same B12 injections. As for the family member who thinks it's all in your head you need to limit your exposure with this person so that they don't try to make you feel like you're crazy. It's very very real. And it's very sad that this person doesn't believe in you enough to believe you. I have an entire family like that that I haven't spoken to in 5 years. Because for 30 years they all said I was crazy and there was nothing wrong with me when the whole time I had B12 deficiency.
I guess I really shouldn't tell you to distance yourself from the people who don't believe you. In my case I had to they were hurting me. And didn't want to listen. But there are a lot of movies out there about B12D that if your family could watch it with you maybe they'd understand better. And I really like what Rexz said to you. He sat his children down and told them that they can't depend on him anymore. Which is a real tearjerker for me. What a brave and difficult thing to do, but perhaps that would be something you could do with the person in your life that doesn't believe you.
No I appreciate the advice, probably should have walked away a long time ago, I have before but tried to let people back in when I had my children, never works. Having this illness means I literally have no energy for taking crap now, suppose thats one good thing as I've been a pushover and took a lot that I shouldn't of
Wow thanks Ellanore yes I have children that I home-school but unfortunately I don't think I can continue which feels like a loss. I don't speak to that family member now I had to put my foot down. It's a complicated relationship anyway which has had periods of separation as they tend to make me feel bad anyway. I have a massive family but I've been on my own since 16. My husband has to bear the load more now as it's just us which makes me feel incredibly guilty. Yes I'm still in the nightmare stage and still hoping it was all just a 'blip' and I'll be back to normal. Suppose I'm grieving in a way and then I feel bad about that because I feel like I'm being self absorbed.
I'm glad you have found ways to deal with it all and yes your so right I'm talking to someone and they tell me they are struggling to find words at times or forgetful and I'm thinking b12, it's coloured my whole view.
Hang in there Rachael. You do kind of have to get self-absorbed for a little while. You are sick and you are trying to heal. Unfortunately that does kind of make you have to be selfish. It's very nice of you to worry about your husband. I think if you get more B12 you might find that you have a easier time dealing with things. Give it some time. Things will get better. Your husband sounds like he's a good person so if that's true he'll stick around and wait for you. I'm sure you're a good person too and you deserve someone to be gentle with you and someone to understand you. Hugs🤗
I haven't time to read all your replies now but suggest you do daily injections or whatever you need to keep your symptoms at bay. Symptoms are your body's way of telling you it needs something.
I've coming up for 8 years of daily SI after 20+ years of deficiency symptoms and I and my life is so much better now as a consequence.
See Wedgewood's posts and replies for all the information you need.
Good luck and ask more if you need any extra help.
Remember you may need to supplement with other things if you need frequent injections.
Folate, potassium, magnesium, iron and vitamin D are the main ones but it's good to take a broad spectrum A-Z vitamin and mineral supplement if you can. Basic supermarket ones are as good as, if not better than, more expensive branded ones. They will cover your main B-vitamin needs, plus have added benefits.
I hope you get some useful improvement - and don't stop trying to get some! You will need to manage things but you should be reasonably well too. x
Good to be cautious but worth asking to have it checked with a blood test. Obviously food is the best source by far but if you are doing all can and yet you are getting cramps, weird low mood and low energy and you test with low levels of potassium then you may have to supplement. (For safety reasons they don't put it in A-Z mixes).
To be honest the tablets don't make much difference if you are low and don't absorb much. They're OK for Drs to prescribe if you don't really have a problem (because they're pretty safe!) but if you are low and do have absorption problems then it's possible to use LowSalt which is 66% potassium chloride and 34% sodium chloride instead of table salt (which is almost 100% sodium chloride).
Low iron affects your mood.
As does low folate - makes you feel bleak.
And low magnesium - very jittery and anxious: sort of scared.
And low vitamin D, which is similar in many effects to B12d, but tends to stop you sleeping too.
All the B vitamins are important in energy release and many affect your skin too.
That's a really kwik summary but I know you'll look them up as and when you can.
yes i take all but i am always low in iron no matter what. I have sea salt, never used table salt for last 11 years, and i seem to like a lot of salt , its not a problem for me as i always have very low blood pressure anyway. So thats a source of potassium,maybe thats why i like a lot of salt. Vit d is optimal , use transdermal magnesium and taking b vits and folate. Also zinc as i am deficient. Thanks for all your replies
I was unable to function properly as a wife and mother for many years and admit to having days when I'm racked with guilt for what they went through.
There were also days and still are occasionally when I'm angry or hurt at the lack of support I was given by people close to me when I needed it the most.
I've had to accept that my family for many reasons were unable to support me in the way I needed and I at the time I sought support elsewhere eg friends, a faith community, disability support groups etc and this forum.
I don't think anyone understands unless they get B12 deficiency as well.
Link to blog post about what to say to family and friends about B12 deficiency.
B12d.org used to organise face to face support meetings near Durham and then they were online but not sure if this still happens. I suggest contacting B12d.org if interested.
Hang in there Rachael7000. The rage does go away. I had the B12 deficiency anger also. I didn't understand why I was getting so angry over stupid things. I would literally shake and my face would turn red I was so angry. Now I just get angry like a normal person (except when a certain former president (whose name will not be spoken) riles me up.)
Thinking back I wonder if my B12 problems were lurking on the edges of my health 30 years ago. I started taking birth control pills when I was 35 years old. A few months into taking them I started to get really, really angry about stupid things. At one point I got so angry at my husband I felt like hitting him. That scared me. I had a feeling the birth control pills were causing the anger so I went to my GYN to discuss it with him. He told me, in no uncertain terms, that birth control pills would not cause that type of personality change. Well, I went off of them anyway and my normal sunny disposition returned. I never took a birth control pill again. Since I was diagnosed with B12 deficiency I did some research and found that birth control pills do cause a drop in B12 as well as other vitamins.
Much of what you write I completely identify with. i genuinely thought my wife would leave me at one point, because I was so emotionally and mentally unwell. It was like Id become a different person, or the worst possible version of me, and everything I needed was completely out of step with normality. This also had a major impact on my sleep and the sleep deprivation just made everything worse.
I also felt, briefly, that Id healed up and didn't need more. This was a mistake, obviously, and on reflection I think I was trying to deny that it was happening to me. I'd already had alot of health issues that detailed my life and relationship, I didn't need something so horrible to round it all off.
B12 is very hard for others to understand. My wife still says she's not convinced that everything that affected me is because of 'just a vitamin deficiency'. She thinks 'I went mental' and we dont really talk about it much anymore.
So I think there's a balance to strike. Your partner will probably never fully understand it. I don't think anyone can understand it unless they've lived it. So, you have to expect that they don't want to hear about it and you might have to accept that it's a battle you can win but on your own mostly. Put yourself first as much as you can. Keep taking B12, dont give up on it. Keep it coming and dont hope for a fast recovery. Just take it as it comes and day by day it will improve. It takes ages, Im sorry to say, and is a rollercoaster. But persevere. And stay hopeful.
And, if it helps, Ive concluded that the cause of my B12D is gut dysbiosis. Everything that came before points towards this, plus sleep had been interrupted for years because of my wifes health problems. So bad sleep, lots of stress, a less than ideal and inflammatory diet all lead towards a list of issues that kicked off woth abdominal pain.
Some people call it leaky gut. Doctors haven't studied the gut as part of their training so I most likely wouldn't have got a diagnosis of it anyway. Hence why I invested in probiotics and Symprove which has made a world of difference to the root cause and is helping my system improve in general.
That makes me feel very sad for you reading that, thankyou for your raw honesty. Yes im am in a bit of denial still but thanks for all the encouragement. I'm sorry its been such a rough time for you and your wife and that there is a bit of shame and avoidance attached to being unwell and talking about it. That really does make it all harder, glad we have this network because I really have more in common with a b12 sufferer than anything else based on age, gender, background etc. Its the only place I feel normal now. Yes the gut has a lot to answer for, I do beleive my problem stems from here also
Good morning!Just a quick note on ways of thinking that might help...
You should only feel guilty for deliberate acts of unpleasantness - if you stole something you should feel guilty. If someone gave you something out of the blue, even if you didn't feel you really deserved it, you shouldn't feel guilty.
You haven't gone out and got drunk, taken drugs and misbehaved to get ill and compromise your ability: it has been a cruel twist of fate that has, out of the blue, put this on you. You shouldn't feel guilty.
If you had, by chance, got cancer or had an accident or similar, would you feel guilty? Probably not, or not in the same way.
Do you look at people in wheelchairs and pity the people who are with them - or realise that the people they are with get lots of benefits from being with that person, regardless of the odd adaptions needed their wheels?
I know it's different - I've been there - and sometimes used to look wistfully on the brightness (just envy them being awake!!) of someone who was more physically comprised than me, having the hideous cloying brain fog, so I do get that, but wanted to use a visual difficulty as an example.
If it was the other way around and it was your partner who was ill, would you think he had just become a drain on your system or would you love him all the more and want to do your best for him?
You'd love your children, no matter what, and you are worthy of being loved unconditionally too.
You know you are doing what you can to improve things so you should be proud of yourself, not feeling guilty.
This is only relatively short term - in a year or two you'll get a handle on what you need to do to manage things and, while you won't be invincible, you will be OK. Already you've made changes to implement a coping strategy. You are already improving!
Like you, I've always had to live with comprised health, but had no idea how much of me it was possible to take away, so I do have some understanding of things.
Just from what you've said here, I know that you don't take things for granted and care very much, wanting to be the best you can be, not for material things or to be flash, just because you care.
But that idealism and care is worth the world - there are "flashy" people out there who don't have any of your integrity and no illness can take that away. You're always going to be better than a false person.
I know it's hard when you can't think straight and you're not in full control of your emotions but try to appreciate the good things that you know you still are and treasure that core that no one and nothing can take away, and realise that you are worth being with for that alone.
You've touched the hearts and minds of people here, who can only get a sense of you from what you've written... So imagine how good it must be to be with you in person! Whether you've vacuumed or not! 🤪😜 x
And one more thing - sorry to keep bothering you....
It might be helpful to score how you feel, at any one time, for those around you. I find that's better than reeling off how grim I feel, which I find demoralising and I'm concerned could sound like whingeing. If I'm pretty rough but still able to put a brave face on it I can say I'm 5/10 and leave it at that and my friends get a good idea but are spared the details! 7 is pretty good! Less than 5 is unable to function, by degree.
After a while you get a feel for your patterns and it, along with the spoon theory, helps you to manage your output and expectations.
Yes! My family expect an ongoing narrative of how I am feeling. 🤦♀️I just want to be left alone. But if I make the effort to join in they assume I am back to normal.
It’s tough on them as I am so different to how I used to be. But I keep apologising and they keep saying there is no need and they understand … and life goes on! 😂
It’s hard but it helps if you can try to see the funny side of things. Some of our conversations are bizarre🤪
Yes, hard on all relationships. One with self most important.
At the beginning, I can't say I looked normal - "grey" nurses told me later.
I didn't act normally either - couldn't for the life of me keep a civil tongue in my head ! At least my partner knew it was nothing personal, but encompassed all in my small radius: librarians, people in the library (didn't have a computer at home), chemists, supermarket checkout staff, doctors and nurses, people on the bus, on the tube etc etc.
I lost hair, lost teeth. I avoided friends. I got slow. I got infections that took ages to heal. I couldn't work any more. I couldn't understand what I read in a book or watched on TV, so stopped trying : too much effort involved. I couldn't drive. I couldn't stand up straight without support as legs would shake. I couldn't bear to be in a crowded room. I walked a lot - mostly just to find some space to myself. Then felt alone.
I couldn't think.
Only frequent B12 helped me; long after I stopped expecting change, I realised that I was making progress.
There was an initial leap forward when I first was given 2 injections a week - everyone noticed and commented - and then it stopped and I was in the doldrums for a long while; neither getting better/worse. My GP had done all she could to help me by then.
I was told I was beyond primary care and sent to many specialists. The first, a locum haematologist, told my GP to reduce my injections down to no more than one every 2 months. What she told me however was more of a warning: B12 is, according to her, toxic, carcinogenic and highly addictive. No proof offered of course, because none exists.
I started self injecting every other day. I told my GP what I was doing and why. Totally disheartened.
I happened to be referred at one point to a senior ENT consultant, who told me (without tests) that yes, I still had B12 deficiency and that it was serious. He said that I was doing exactly the right thing and that I would need to be persistent, to carry on because it would take a very long time to get better.
I think he saved my life.
I still need to self inject to control symptoms, but now reduced to two a week.
It does work, it can take a long time, much support here and I hope you find a Liverpudlian !
Take it easy, be kind to yourself. Let us know how you get on.
Thanks Cheryl, like you I had an initial massive improvement and now not so much but everyone has told me now that it will take time so just have to patient. Thanks again
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Want to self-inject but no GP referral
Does anybody have a b12 deficiency without having pernicious anaemia ?
19 years old, wanting to self inject B12??? - long post!
Usual diagnosis problems
