Support for our long suffering families

[Connolly77]

Hiya, still pretty new here and if I'm honest new to the whole forum experience... My question today is how do people find they can help support partners and families when we're at our lowest?

I've only just had my second loading dose and have taken such a dive over the past week or so (before I started them but the loading doses also seem to be exacerbating the symptoms) and my husband is not only clearly worried about me ever getting better but also (and I maybe being paranoid, I suppose it would tie in with the symptoms!) I reckon he is struggling and stressing a bit with the fact I'm just not functioning well and he is inevitably having to pick up some of the slack. My youngest daughter age 10 is worried, hates to see me feeling ill, and I feel like I'm totally neglecting my eldest daughter (13) who I would usually make a much more concerted effort to interact with. It's really difficult to watch things deteriorate domestically (don't even get me started on the state of the house...) And I really want to reassure them all that it's all going to be ok and I'll be back to normal soon but I obviously can't be specific about when that will be. I know it's not a medical issue but if anyone has any experience with this any advice would be very much appreciated!

[wedgewood]

Dear Connolly 77 . Do not lose heart . It is quite common for PA patients to get worse before they get better when they start treatment. You will get messages from more knowledgeable people that about that I assure you . It’s very early days yet .in your recovery . If you could scroll back on the messages , you would see that this does often happen. Have you been advised to also supplement with folic acid ? Unless you eat a diet high in folate , it’s a good idea to take a supplement . ( 400 ug say ) it’s also called vitamin B9 , and works with

B12 . You were surely prescribed them when you were pregnant .

So my message is please be patient . It’s difficult when you are feeling so unwell . You are always welcome on this forum , and you will find lots of support from people who have been in your shoes . Believe this ! Yes it’s difficult for your family as well . This situation comes about because the medical profession has such a poor understanding of PA /B12 deficiency . It has such a myriad of symptoms , and we are all different , needing different amounts of treatment . ( this is not generally accepted by GPs . ) it’s a good idea to read all the posts on here . It’s amazing how much knowledge you can glean . Keep us informed of your progress please . We will help you in any way we can . Best wishes .

[Connolly77 in reply to wedgewood]

Thanks wedgewood I do really feel that this is a lovely supportive and informative group with such a wide range of experience among it's members. 🙂

[clivealive Forum Support]

Hi again Connolly77 I had a similar experience when I was diagnosed with P.A. at the age of 30 over 46 years ago with a sick wife with heart problems and two daughters under five.

By that time I was like a walking Zombie and it was only by my then doctor's persistence in sending me for a second "Schilling" test (the then used method for diagnosis) four years after the first in 1968 that it was "found out" what it was that was "wrong" with me.

Unfortunately, one might say, apart from perhaps turning a little pale or yellow we don't manifest any outward signs of our debilitating illness and I spent five months being retrained in accountancy with 90 plus "disabled persons" and I was constantly being asked "what's wrong with you?" and this "attitude" continued down the years in work when colleagues queried where I disappeared to every fourth Tuesday at 10.30am for my B12 injection.

Sadly ignorance of P.A. is endemic among the medical profession - "it's a vitamin for goodness sake" they cry and I too "lived in ignorance" for nearly forty years before I joined the Pernicious Anaemia Society and asked questions on their then forum and discovered that "I was not alone" - and now you too are not alone either.

It is very early days in your treatment and as wedgewood rightly said above it may be that you will begin to feel worse before you get better. That this is not uncommon should be of some "assurance" to you as it is a sign that the B12 you are having injected is working at repairing the damage done to your nerves caused by the deficiency.

Was your Folate level tested?

Perhaps you could get your husband to read any replies to this and your previous post to see some of the experiences and advice from others but above all assure him that there is "life after P.A." and I'm still "clivealive" at the age of 77.

I wish you and your young family well.

[Connolly77 in reply to clivealive]

Thanks again clivealive apparently my folate levels were "fine" whatever that means, however last night I did get a full printout of all my blood results which I intend to thoroughly examine and decipher later on. It may well be time to supplement myself through this process despite having what I consider to be a very healthy diet. Thank you, I just want my family not to be so worried! And I'm possibly a little impatient to feel better too.... 😕

[clivealive Forum Support in reply to Connolly77]

It's not a magic overnight cure although some symptoms may well disappear quickly.

Sadly a "good diet" may not be enough if you have absorption problems with your digestion caused by disease, surgery, medications etc.

I lost two thirds of my stomach due to a burst peptic ulcer at the age of 17 in 1959 but the connection between gastric surgery and P.A. was not then recognised it was 13 years later before I got the diagnosis after the second Schilling test.

Yes, please do try to be a "patient patient". It's a good idea to list your (now) symptoms and score them day by day which ones improve (or otherwise) to see what progress you are making - it will also help your doctor to decide on your ongoing and future treatment.

Here is a general symptoms are common in those with PA:

 The Strange Tiredness

 Fog days, where you have difficulty in thinking clearly

 Weakness

 Fatigue

 Upset stomach

 Abnormally rapid heartbeat (tachycardia) and/or chest pains

 Abnormal yellow colouration of the skin (jaundice)

 Heightened sensitivity to hearing, smell, and taste

 Vision distortion, e.g. seeing stars, or double vision

 Breathlessness

 Headache

 Cankers (ulcers) in the mouth

 Sleep disorders

 Intolerance to loud sounds, flashing lights

 Intolerance to crowded malls (needing personal space)

 Tinnitus – ringing in ears

1.2 Neurological Symptoms

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

1.3 Gastrointestinal Symptoms

The gastrointestinal symptoms of vitamin B12 deficiency may include:

 A sore tongue

 Appetite loss

 Diarrhoea and/or constipation

 Stomach pain

You may not have all the above symptoms but perhaps your husband will help draw up your "personal" list and monitor your progress and in this way he will understand how you are feeling and eventually enjoy seeing you getting better.

Take care now.

[Wagonwheel]

Hi Connolly77

Hang on in there!

I had my first loading injection 20 July and felt exactly as you do, PA is a cruel disease very much one step forward 2 steps back but you will start to feel better.

One of our wonderful forum friends posted a link to the Sally Patcholok story (I'm so sorry I forgot who - my short term memory is still recovering!)

Link here, maybe you and your family could sit down together to watch it?

youtube.com/watch?v=OvMxJ6G...(Not working as expected?)

Very best wishes

[Happysmile]

When I first started treatment I was up and down physically and emotionally for the first two to three months. Some things improved pretty quickly, others took longer. Thank goodness for family support. I think if you explain to your family that things will be a bit up and down initially but that you are on your way to feeling better as you now know what the problem is, they will hopefully gradually understand. By learning all about this deficiency, reading upon it and joining knowledgeable forums such as this, will help you understand that so many others feel the same and will help empower you to take control and get your health back. There are some really positive stories to be read. Personally, injections were a life changer for me, but it took time and I still have to pace myself and not overdo things. Finding the frequency of injections that is right for you is the key, as well as ensuring your folate levels are right too. Initially my iron levels dropped due to so many new cells being made so I was prescribed iron and I had to up my intake of potassium rich foods too. Good luck with it all and I hope I have helped in some way. (I am not medically trained and can only comment from my perspective and research I have undertaken).

[Annnon58]

Hi Connolly 77 , I am a carer for my husband who has PA . I give him B12 jab every Sunday and make sure he has folic acid every day to help utilise b12 , his symptoms are very slowly improving as you will too . Could you try and involve the kids in housework , simple tasks such as empty waste bins? I always wish I’d taught my daughter to cook as when she got married she rang me up to ask how to cook potatoes 🤣. You could engage with your daughter by getting her to help prepare meals , just an idea , bit like home economics lessons . I hope you feel better and better each day , pace yourself and try to involve friends and extended family to help you . good luck x

[gillsie]

Dear Connolly 77

If you have a positive diagnosis and will be continuing to get treatment you will slowly improve. You may need to help yourself by taking the co factors you need to allow the B12 to work like iron and folic acid. Working out what your body needs takes time and is a juggling act. There are clever helpful people here who can explain about the co factors.

If you can get your loved ones to read some of the literature even the 13 yr old it may help them to understand.

Also if in the short term they can help share jobs at home. Even the children can do a little. When i was growing up in a poor family my mother had to work and both parents were not in the best of health. My sister and i had simple chores to do when we got in from school like peel veg for tea, put the carpet sweeper around and lay the table , wipe the dishes - all old fashioned stuff.

Sitting and talking to them and asking them how they feel they can best help you while reassuring them that you are doing your best to get well may help you all.

There is no magic bullet and most of us with PA have good times and dips . Often we have to be proactive and help ourselves when the NHS can't supply adequate treatment regimes.

We are all out here and understand what you are going through. Hang in there. Is there a support group near you? The group I attend welcomes husbands and they learn a lot. Xxxx

[Cherylclaire Forum Support]

Be as honest as you can with everyone : friends and family, work, GP and consultants. Between clivealive 's list and Wagonwheel 's link, you will probably recognise yourself and may see symptoms that you didn't even realise were connected. This can be a relief, but also a bit overwhelming. Don't go through this alone.

There are a lot of helpful and friendly people here that know by experience what you are going through, even though we are all different.

Check that your iron and folate levels are in the top third of range ideally (advice from here, not GP, but seems to work for me) - also vitamin D levels might need checking... these seem to be the most commonly linked deficiencies. Get good multivitamin & mineral tablets- check they are going to give you what you need.

Keep in touch and good luck.

[Nackapan]

Yes all of the above. It is a diffucult time with no set course. I'm in the early days too. 3 1/2 months in. Things do change on the domestic front. Children are amazing when given a role. It's best to make changes now rather than waiting to get better. I've now had to make many. I used do do alot for my mother and others but now I need the help!!

Hope things improve for you soon.

Take care

[Dopey-Grumpy-Sleepy]

Hi Connolly77.

From my own experience: I was diagnosed in 2016, but my B12 levels of about 150 were recorded as far back as 2012 and maybe even earlier. So I had been symptomatic for several years before the diagnosis. The diagnosis helped my family to understand that there really was something wrong with me, but it didn't help enough. While I was busy researching and learning things about B12 deficiency that helped me forgive myself for my inability to do my job and keep a house, etc, my family was wondering why I wasn't getting better despite getting treatment. They thought that as soon as the loading doses started, I should start getting back to normal. I understand; I thought the same. When I tried to share what I was learning online about how awful this disease is, I suspect it sounded like I was complaining and so it didn't gain me the understanding and sympathy I hoped for. Then I found a youtube documentary that was factual, fascinating and heartrending. After sharing it with my family, my husband turned to me with more sympathy and understanding that he'd ever shown and said "I am so, so sorry". He was expressing sympathy for my suffering, but he was also apologizing for failing to understand the severity of what I was going through. I haven't watched the fictionalized account of Sally Pacholock's story, because sometimes fiction tries too hard to manipulate our feelings, and I wanted something that was more scientific to reach my husband. This video features interviews with Sally as well as doctors, researchers and patients with varying levels of disability. You will need to copy and paste this address but here it is: youtube.com/watch?v=QqjyAeO...(Not working as expected?)

The most important advice I can give (learned the hard way) is to avoid raising the hopes of your family too high. The recovery on this can be long and slow. There will be improvement and setback. If your family expects that the treatment will quickly take care of the problem, they will be disappointed and frustrated. It's human nature to want to blame someone when you're frustrated or disappointed, and if they expect you to snap back they may feel that you're not trying hard enough or that the problem is YOU. They don't mean to be unsupportive but again, it's just human nature to look for someone to blame, and often it's the victim who gets blamed in our society. Whether it's disease or poverty or rape or whatever, we've all seen it happen. Most of us have even done it. Human nature isn't always as noble as we'd like it to be.

So...(1) The video will tell them that this is serious business and that your suffering is real. (2) Sharing with them that this is a long recovery will help to avoid their frustration spilling over onto you.

I have one more piece of advice, maybe not entirely on point, but one that could have saved me a lot of suffering (not to mention my marriage) if I'd taken it seriously when the good members of this forum broached it. If you don't see noticeable improvement within a few months, self-medicate. Do not accept the medical community's one-size-fits-all dosing. It's possible that over-the-counter liquid B12 will help you, perhaps even sublingual B12. Injections, of course, are the most effective weapon for most of us. (Interestingly, I have found that for me, B12 injections help me far more if they are supplemented by liquid B12. I have no idea why that is true, but it's proved itself to be true over and over.) I tried self-injecting into my abdomen and I found it to be so traumatic that I failed at it until someone here mentioned using 1/2" 29-gauge needles. It made all the difference. After receiving injections from my doctor twice a month for a year with varied results (i.e. a roller-coaster ride), I have been self-injecting 500 mcg of methylcobalamin every other day for about 2 months and I'm finally experiencing consistent better health. Not the health I had before this deficiency barged into my life, but health that lets me live a fairly normal life.

I wish you the very best.

Dopey, Grumpy, Sleepy

[Connolly77 in reply to Dopey-Grumpy-Sleepy]

Wow, Dopey-Grumpy-Sleepy I really appreciate your honesty 🙂 sometimes the truth is difficult to hear but ultimately it's the only way forward. Thank you.

[Ritchie1268 in reply to Connolly77]

Hi Connolly77

I know this is a couple of weeks old now but I just wanted to add that everyone who has replied to you are stars & have all been there.

I truly hope you start to see the improvements sooner rather than later but it can take time & everyone responds differently as we're all different.

The link to the YouTube video Dopey-Grumpy-Sleepy posted is the best I've seen & just shows how different people suffer & how symptoms vary greatly.

I was having blood tests for ages & being treated for depression, over time with 3 different types of antidepressants that never worked so I refused to take anymore.

All the symptoms I was having, I just put down to withdrawals from the many years I was taking really strong opiates for my disc desease.

3 yrs after finally being free of theses opiates, I was still suffering with certain things.

Finally diagnosed last year with PA/B12 & Folate deficiency & I didn't notice any improvements until after my first 3 monthly injection, I felt the best I'd felt for years! Full of energy, wanting to do stuff I forgot I used to enjoy etc, but sadly for only 3/4days. Same after 2nd injection.

Thanks to the advice of Wedgewood & the many great people on here I have been self injecting now since Xmas & even though there are still symptoms, many that I did have, have now gone.

I sincerely hope you start to feel better soon.

Take care

[Wagonwheel in reply to Dopey-Grumpy-Sleepy]

Thank you so much for posting this factual B12 documentary, so much better than the fictionalised version.

[camphillgirl]

Hi Connolly 77

I was diagnosed with PA in November 2016. I ordered books about it and tried to get my family to read but they wouldn’t. I was so down, my husband decided to google about PA and finally understood about it.

So order books and insist on him doing his own research. And by all means let them read this forum. This has been the best thing for me. I now know that when I have my down days, it’s just apart of the condition. Also, I share this with my GP. I now self inject 2 times a week which has made a big difference. However from reading this forum, I learned that I needed folic acid, vitamin D, potassium, and magnesium to go along with absorption of the B12.

It’s been 2 years and I still have good and bad days. Most of my symptoms have disappeared.

Hang in there.