How can I help my mum?

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Good Evening,

My mum has recently been diagnosed with Vasculitis. Her main symptoms are swollen and painful limbs (not just in her joints but random places) and burst capillaries, but my main concern of late is her mental health. My mum is a tough cookie but this has really knocked her for six and I was after any advice as to what I can do to help her?

She has had X2 courses of steroids, which help temporarily, and is currently taking painkillers regularly which just about take the edge off. We are awaiting a kidney biopsy which will hopefully determine whether she is prescribed Methotrexate or Cyclophosphamide to help her condition.

I have looked into dietary requirements and have adjusted accordingly but is there anything else I can buy/do to help? I am clutching at straws here but is there something to assist her getting by in everyday life? Oils/ointments? Something to help to tackle stairs when this flares up? Anything to lesson the tightening in her calf’s? Anything to help her reach cupboards when her arms ache or general advice to help when she is feeling low?

Hopefully, when she is prescribed drugs this will ease the symptoms but I really am open to any suggestions meantime. It’s difficult seeing the strongest woman I know decline mentally as she is frustrated at not being able to live her normal life for fear of pain. She is also suffering fatigue and tires very quickly.

I can’t seem to find anything on the internet other than drugs so any advice would be greatly appreciated!

Cheryl

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  • Posted

    HI Cheryl. What a considerate daughter you are. You're right about things improving once treatment starts but it's really hard whilst waiting. Have you or your mum joined the facebook page vasculitis support? There is also a separate page for families if your mum wanted one page and you wanted another. Any questions put there, will give you a large variety of responses, ideas and people's experiences, if that helps. Knowing you are not alone in this is a relief and support is great for both of you.

    This condition is one heck of a shock and such a whallop to a previously healthy and active person. Having someone like you who believes them, whether you can see it or not, is a massive support as so many people do not understand what they can't see.

    Your mum may well feel angry, frustrated and almost a grieving process as we want to be as we were and not how we now are.

    It can be a long and sometimes bumpy road but with the right consultant having vasculitis experience (and that's really important), they can make such a difference.

    I would have to say don't fight the fatigue as it isn't fruitful. Listen to your body is what my consultant says all the time.

    Treatment will change things bit by bit and in the meantime it is well worth keeping a notebook diary of events, how she feels, pain levels, anything that is relevant really. I grade my fatigue too such as tired means a sleep picks me up a bit; exhaustion means I can do it but it really takes it out of me; fatigue means I couldn't move if there was a fire.

    Take photos of the rashes/bruises as it is easier to show your consultant than to try to describe.

    My family felt like you; watching this string, upbeat, can do person, become too tired to care at one point but there are treatments; it might seem a slow process but it's important all tests are carried out first if possible, to prevent meds interfering with results.

    It's early days yet but there are regional groups too when you're both ready.

    I hope things get moving soon.

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    • Posted

      Maria,

      Thank you so much for taking the time to respond to my message.

      I have taken your advice and joined a Facebook group and will let my mum know about the diary and pics of rashes.

      Thanks again!

      Cheryl

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  • Posted

    She could try vitamins and oils. Oils are supposed to help joints and overall body function.

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