Coping with the conditions on a daily basis.

[bernieembleton]

I have struggled for a long time been able to do everyday activities. It's been much harder lately has we have just moved, but for the better. I have to have help with cleaning and cooking. I can only do a bit then I have to rest. I am also having problems with anaemia , which is unexplained.

[Wittycjt]

Congratulations on the move. That in itself is very exhausting.

I’ve had problems with anemia in the past and was put on a daily multi-vitamin and an additional iron tab. Are your limitations due to stroke, pain, or breathlessness? Apologies, but I don’t recall. I hope today is a better day!

[MaryF Administrator]

Hi, I hope you pick up again soon, have you done any decent B12, and Thyroid testing of late, I am afraid I go private with that as a) the NHS only to the TSH which is not accurate, and with their B12 only one test, which mainly picks up the supplement you are taking, the one I do does two which shows up what is going on. I did this recently with my daughter who had been told she was fine, I was able to show that she had a folate deficiency and B12 deficiency despite the daily intake of supplements and the right things, I did a fairly inexpensive panel which I ordered myself which also includes vit D etc. MaryF

[bernieembleton in reply to MaryF]

Hi Mary. My B12 was okay it's my ferritin levels that are very low, down to 5 and Hb now declining. I cannot take iron suppliments as they cause me gastric problems. I am having an urgent endoscopy and colonoscopy to rule out a bleed. As I have a strong family history of cancer. I am already on Vitamin Do long term. I have told my GP that I am symptomtomatic breathless, exhausted and bone pain. It is my immunologist who has flag this up. Hopefully they will get to the bottom of it. Thank you for the advice of having private bloods done. Regards Bernie Embleton

[Lauren2121 in reply to bernieembleton]

Have you tried Garden of Life Healthy Blood formula? It’s a whole food supplement. I take double the dose and this has helped me with anemia - I stay in the normal range now. It doesn’t hurt my stomach/GI tract at all, and I’m as sensitive as they come... hope you’re feeling better soon!

[mrsleek]

Hi bernieembleton, I can fully understand your story I have been anaemia now for 15 years or more and I have had all the tests even the camera tests top and bottom and they still couldn’t find a reason for my anaemia,so in the end they put it down to anaemia caused by chronic illness and I just get on with it.

Hope this helps. X

[bernieembleton in reply to mrsleek]

Thankyou. I think this will be the problem. I go for double procedure , of endoscopy and colonic op on the 31st July.

[mrsleek in reply to bernieembleton]

Hi Bernie

I think having these procedures done will put your mind at rest in one respect, as with myself and I hope it will be for you the tests came back clear so that was good but then what was causing the anaemia and that is when al,of my Ologists had a meeting along with my GP and went over all my blood results scans etc and that is when they came up with anaemia caused by chronic illness, and when my numbers get too low I go and have some transfusions of either Venofer which is the one I prefer or Cosmofer, I do hope I am not freaking you out with all this info please say if I am but also feel free to ask anything I haven’t mentioned my memory is awful x

[bernieembleton in reply to mrsleek]

Not a problem thank you. Not much freaks me out. I think this is what it will boil down to chronic illness.

[WendyWoo50]

Hi Bernie, I really feel for u and understand where u are.

APS along with the other conditions that often go with it like, Lupus, Thyroid, Sjogrens, Fibro ...make us feel very ill.

There's some good advice here, re blood tests and supplements. But there ultimately has to be an acceptance. Acceptance is not giving up. Stopping fighting does not mean you lie in bed or stay home. I think we always need to push ourselves. I always say that the most difficult thing I do each day is get out of bed and get ready!

When my son was young I realised if I cooked, cleaned, ironed etc I had no energy to be a mum. Luckily I was in a position to employ someone to help me.

Now he is grown and left home and I'm so much worse, I still have help. I look on the need for help not as failing but as freeing me or my spoons (energy - have you read the spoons theory?) so that I can do more of the things that bring me pleasure.

There may be some benifits ur entitled to eg: PIP. If you claim Care component then I believe you are entitled to a cater too.

In summary:

1) check ur diagnosis and bloods

2) consider supliments

3) explore benefits

4) save your energy for the things you like to do

5) give your life meaning.- read my inspirational words about happiness

Lots of love - u will get there 💋

[bernieembleton]

Thank you for your response. I am already in the process of investigations. Suppliments disagree with. My anaemia has been long term. I have help with my house work and retired on ill health. I was a full time mother , but all grown up and grandchildren, also all grown up. I was a full time midwife, owned and run my own B&B. , but due to a medical blunder my immune system was triggered and I have not been the same since. I am a very positive person and have coping strategies. Thank you very much for your advice. Kind regards Bernie