Hi any ideas how to explain just how all consuming the exhaustion gets on a bad day? I'm going for my next jab tomorrow and just have nothing left would like to spend my day sitting watching tv or sleeping but with a 4 year old that isn't likely to happen. My husband tries to be understanding but the exhaustion is one part he just can't grasp,I wish I could swap bodies for a few hours just to show him what I mean, I don't just feel a bit sleepy I have overwhelming waves of tiredness like nothing else and it's a different sensation to when you are ready for bed or had to getup earlier than normal.
Anyway I know I am.very lucky compared to many as was diagnosed and started treatment pretty quickly but hopefully can show this thread to him to give some insight!
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Clare184
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I feel your pain! I often get told that a walk in the fresh air will make me feel all better. Its impossible to explain this tiredness to somebody that hasn't experienced it, isn't it.
It saps you of everything: Strength, mental clarity and the ability to do anything that isn't entirely necessary.
Have you heard of spoon theory? It's an essay written some time ago that explains what it's like living with a chronic illness. In the author's case the illness is lupus, but the theory applies pretty well to other chronic illnesses that cause fatigue. Here is the link to that essay: butyoudontlooksick.com/arti...
Hi Clare184 I can sympathise and empathise with you.
When in 1972 I was eventually diagnosed with Pernicious Anaemia, 13 years after gastric surgery, I had not only "lost" my chosen career (as an electrician) but was walking around like a Zombie and my doctor gave me the "bad news" that I only had two years to live.
I was 30 years of age, had two daughters under six and a wife ill with heart problems from which she would eventually die at the age of 46 in 1992.
Two years previously in 1970 I had been Registered Disabled because of the surgery (NOT the then unknown P.A.) and sent to a college in London where with over ninety other disabled persons was retrained in bookkeeping and accountancy. I was the only one on the course not to manifest a physical disability. I stood six feet four tall and slim among those missing arms, legs, hands, eyes etc., etc., and was constantly being asked "What's wrong with you?"
Having told me the "bad news" my doctor said the "good news" was that I wouldn't die within two years if I had Vitamin B12 injections for the rest of my life - and 46 years later I'm still "clivealive" and coming up to 77 years of age.
Ask your husband to look up the word pernicious and he will find among others deadly, lethal and fatal - that's how serious it is - without the proper treatment - but we can still be left exhausted and debilitated at times.
Perhaps it was "fortunate" that with my late wife's inability to "do much" physically, we had a mutual understanding of each other's "shortcomings" and considered ourselves a "pair of old crocks" despite her being five years my junior.
I often feel "guilty" for "not taking part" in some activities with my then growing up children (now with grown up children themselves) but I quickly learned that P.A. was self limiting. It is also known as "the silent killer".
I am not a medically trained person just a fellow sufferer.
Thanks Clive, I know what you mean about the guilt but I do feel very lucky that thanks to this forum my problem was picked up quickly so symptom wise mine is very mild compared to many. Hubby is very good in most ways but think he sometimes just thinks I'm being lazy
With that level of exhaustion it may be sensible to fight for more frequent injections.
My GP was helpful and agreed to monthly injections (although ultimately I have ended up self injecting weekly which allows me to both function without exhaustion and have a full life again).
Thanks Jan, I have been moved to 8 weekly a few months ago but have always found the tiredness returning after about 7 and am stupidly at that point where I don't dare ask for more in case they move me back to 12 weekly!
It was for that reason I decided to self inject. My gp was happy to let me have a prescription for a box of 5 vials every 5 months and the practice nurse showed me how to self inject. That gave me the freedom to have an injection at a frequency that suits me and I can top up with B12 which is available over the counter in Germany which I buy online.
I think I failed to get people close to me to understand just how exhausted I was when at my worst. I would spend hours sitting in a chair, too tired to do anything else. I tried to get my family to read the B12 books below as some of the case studies were like reading about myself.
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
I have heard of PAS members taking a partner/family member to PAS support meetings. I guess hearing other people describe the same symptoms may help people to understand.
I would get these moments everyday for a long time where I felt as though I would burst into tears if I couldn't just lay down and close my eyes and go to sleep right NOW. It was unbearable and no one understood it. It was terrible! I come to find out my iron was low even though my ferritin was "normal". I haven't felt it ever since I started taking a low dose of iron daily. I feel for anyone having to deal with the exhaustion!
Hi Clare I get exhausted too before my next injection. I agree with everything you've said. For me, I can even be sitting on my sofa on my phone and have to say "Okay I'm sorry but I need to sleep right now". It's not a case of feeling tiredness approaching. It's almost like being given an anaesthetic and you have to close your eyes that very second. My family and friends thought I was "at it" til my big sister's friend was diagnosed and is exactly the same. I hope your husband can read the thread and I wish you well x
I felt like I had came straight off night shift and then done a 12 hour flight with no sleep.When visiting a friend I even fell asleep on the toilet at mid afternoon.I am unfortunate in that my doctor was very stubborn and would not listen to me so I self inject fort nightly which has helped greatly.
Our daughter was diagnosed with PA over 20 years ago when she was a young mother with a couple of very lively little boys. She would have periods when she was desperately tired and just had to go sleep. Her doctor had told her she should need the injection for a week then wait a week before going for it - it seemed like nonsense to us but she used to do that. That quack has now retired and she has been self injecting for a few years so now has control. She does still have exhaustion days but most of the time she is a real powerhouse and just never stops. Her husband recognises the bad days and has become very supportive over the years. She brought up those 2 boys, did a part time clerical job and still does and leads a very full and active life. There is light at the end of that tunnel Clare184.
Perhaps you should ask if you can self inject as that would mean you could refresh yourself without waiting for a surgery appointment and, if you are on a 12 week cycle, you get 5 ampoules at a time and even the pharmacist understands just how easy it is to trash one when opening them so with a little occasional 'white lie' you could bring the cycle down to 10 weeks easily and perhaps 8 by requesting the repeat prescription a little earlier each time. (There is always versandapo.de for more.)
All this meant we knew about the exhaustion problem but neither me nor my wife put that and my own periods of exhaustion together until the surgery arranged for my starter set of injections following low levels on a routine blood sample.
Now we know what the symptoms are and also realise I was asking for solutions to some of them long before the blood test results were in. Even injecting weekly I still get the 'don't give a damn' days when everything is far too much effort, but as we are now well into our 70's people seem to accept that as something to do with my age.
I do know what you mean, self injecting has helped me a great deal, the age issue sometimes infuriates me, now I have hit 65 I have changed from being "the lazy wife who expects her husband to do too much" to "the poor old thing, when will you be moving into Sheltered Accommodation". I sometimes feel, if I had the energy, I could be quite rude!!!
I would remind them that you are not getting the oxygen you need. Sometimes it helps to push family to understand why you are feeling instead of what you are feeling. I still have my dad asking if I have thought of just having a little nap during the day - because that always helps him to feel alert and can get back to work, etc. I try to explain it’s not like sleepy tired it’s like - nothing you can imagine. I cannot explain how it feels to him only why I feel that way. Just started SI last week so hoping I improve.
Have also looked longingly at the floor beneath my desk and considered just lying down during the workday!!
It is difficult to tell other people, my B12 loss is due to damaged intestines, however fatigue is fatigue. I worked with this, however was only able to manage because I worked three days a week, and slept for at least 2 of the others, I mean slept, I did not cook, clean, launder, iron, dust or anything else, we needed my income and my husband understood. Also my employer was the Health Service, and the head of the team I was in really understood. My other benefit over you, was that steroids were the treatment for my main illness, so when I had a bad bout I got a steroid boost, turned me into Zebedee. Although now I have the side effects of the steroids!! My husband understood, because near the begining he came home from work one day, to find me leaning against the kitchen sink, (only way to stay upright) tears streaming down my face, with a potato peeler in one hand and a potato in the other, I was so exhausted I could not work out what to do with them!! My inlaws were a problem because they did not understand what having a chronic illness means, like some other people they kept asking "when I was going to get better" hubby ended up asking where they were going to find the magic wand. B12 injections do help, but you do need to manage the fatigue, listen to your body, give it a little love and care. All the best.
Please think about SI ! You will feel like a new woman after a few months or even weeks! God knows how I survived for many many years before I was even diagnoised at about 48! You then get the 3 monthly injection which is nothing like enough so Please don't waste your life for a simple solution and a cheep remedy! Liberate yourself like so many others on here!
Describing just how consuming the exhaustion is? Try showing them instead... 'Dementors' in Harry Potter films visualise it for me!
Find a scene where a 'Dementor' is sucking the life force from it's victim.... it's just like how PA can suck every ounce of energy from us. And it's not just the energy/lethargy... It's the despair and hopelessness, grief of losing the person you once were, frustration of no-one truly understanding, fear, loneliness and isolation.....
But there is a light at the end of the tunnel, our 'patronus charm' lies in the form of B12 injections and blood-health supplements so the Injections actually work! Self education about the condition, taking ownership and control of it, because I've yet to find a GP who appreciates, understands or has empathy.
I was diagnosed with PA 2011, and until finding the Pernicious Anemia Society last year 2017, didn't know the importance of folate and folic acid, and still don't understand the complexity of blood chemistry!!!! I had no idea that without B12 I'd end up like my Mum with pre-senile dementia in her 50's (I've just turned 51, and the similarities are scary!). I was treated according to NICE guidelines with no follow up blood tests until I asked for one 6 years later.
I've now started to SI and take supplements, though struggle to keep it as regular as I should, which I suppose is all part and parcel of PA. It's slow going, the comments on the forum "it will get worse before it gets better", I can certainly relate to, but looking at from a positive perspective, I haven't dented or scratched my car maneuvering into a challenging garage since November!!!! Nor have I tried zapping my front door with the car key in an attempt to unlock it, I can now curl my toes without pain shooting up my feet, joints don't ache as much and "Good Days" are starting to feel good instead of "just tolerable".
Don't let this disease and the ineffective treatment we are offered rob you of such a special time in your life. Two options: take on the NHS/NICE/GPs, or take ownership, listen to your body and SI. Take care of yourself Clare, sending you love and hugs XXXX
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Can Someone Explain this Paper?
As yet undiagnosed for PA, exhausted, advice needed..
