Needing support

[Shelleighjones]

42 mum of 4 diagnosed with PA 11 yrs ago. Still nobody understands what I go through alone

[Rheadster72]

You're not alone. Plenty on here sound like they have the same ups and downs, with many a similar story. Most days i feel like a walking zombie. No diagnosis as such yet but plenty of symptoms to make me feel weird. B12 SI not helping fully yet

[Shelleighjones in reply to Rheadster72]

I’ve been having the injections 3monthly until recently I’m having the every 8weeks but I’m still constantly tired and very tearful.how do I explain 2 my family

[Rheadster72 in reply to Shelleighjones]

That's a tough one. I would explain to them that some need injections more frequently than others and it can take a long time to get things right again. It takes patience and needs a lot of support. That said, I sense my other half is fed up with my daily recount of my symptoms. I started describing my daily symptoms so I wouldn't forget any of them when I needed to explain them to the Dr - brain fog was a nightmare before supplementing. Have any of your symptoms improved? If so maybe point that out to your family as a starting to get better point but also highlighting it will take time. Do you have any positives that you can focus on to help lift your mood when you feel a little low?

[Shelleighjones in reply to Rheadster72]

I feel pathetic saying no but my boyfriend does nothing 2 help or understand so in turn my children don’t understand either and I can’t keep fighting every one all the time.

[Rheadster72 in reply to Shelleighjones]

It is difficult trying to explain the situation as on the outside I would imagine I appear quite fit and normal, but the body most days feels rubbish. And when the head symptoms or tinnitus start on me it is miserable. Do things improve after your injection? It's not great trying to deal with this without support, but definitely reach out to people on this forum they will help you feel that people do really care and know what you're going through

[Shelleighjones]

Thank you so much 4 answering me. I can’t keep dealing with this all on my own and b a good mum. Pls keep in contact x

[Rheadster72 in reply to Shelleighjones]

It's not easy when you're knackered, irritable and fed up looking after a family. I have days when I don't even recognise myself for how irritable I can get with the kids. Thankfully, although they're still quite young, they do seem to understand. Look after yourself

[clivealive Forum Support]

Hi Shelleighjones it's good to read that you are now getting your injections more frequently. It may be that you need them even more often still if you are still having neurological symptoms.

Have you had your Folate level checked? This and B12 helps your iron to function properly in your body and make red blood cells.

I do know how difficult it is to explain this seemingly "invisible" disease to others. Perhaps you should "shock" them by showing them on here what the word pernicious means:

harmful, damaging, destructive, injurious, hurtful, detrimental, deleterious, dangerous, adverse, inimical, unhealthy, unfavourable, bad, evil, baleful, wicked, malign, malevolent, malignant, noxious, poisonous, cancerous, corrupting, ruinous, deadly, lethal, fatal;

Indeed P.A. has been described as "the silent killer" and that without your B12 injections for the rest of your life you would simply die.

I'm sorry you are struggling and seemingly without any support. Go back to your doctor, explain how you are feeling and ask his help and to check your Folate level.

I am not a medically trained person but have had P.A. for 46 years and when diagnosed at the age of 30 back in 1972 I was "given two years to live" - unless I either ate raw liver three times a day or had the B12 injections. I chose the injections and I'm still "clivealive" at over 75

I wish you well

[Shelleighjones in reply to clivealive]

Thank u so much 4 ur message I really didn’t realise that the support was even there. Wud b good 2 keep in contact if ur interested

[clivealive Forum Support in reply to Shelleighjones]

Many of us are here every day at some time or another so if you need a chat or a rant you are always going to be welcome.

I spent the first nearly 40 years in complete ignorance of what P.A. was all about as I didn't know anyone else who had it and the succession of nurses at my local surgery never asked how I was coping.

Seven or so years ago I joined the Pernicious Anaemia Society and asked the question on their then forum "Does anyone else have a return of neurological symptoms in the run up to their next scheduled injection? I was amazed at the dozens of responses and NO - I was not alone.

It took me a long time to "persuade" my "one size fits all" doctor to increase the frequency of my injections but it was a battle won in the war of getting a better understanding of the disease P.A.

I'll bid you goodnight.