My journey goes on...

[Mamamia21]

I have just been updating my profile to add my medical history to try and help others understand my journey. It is amazing how difficult it really is to put down a timeline after the event. It did however make me read through some of the letters I have received over the years and have begun to realise that this unknown autoimmune disease may never be fully diagnosed. At one point I am accused of maybe not having any kind of condition and possibly being addicted to steriods.

As you can now read, my journey over the years has been up and down and I have probably become a yoyo steroid taker... I do try to reduce slowly but I'm one of these people who tries to ignore the signs of pain coming back or getting worse. I also am my own worst enemy and probably give the specialist the impression that I am not in that much pain which leads to the type of letter I received that I mentioned earlier. This is my coping mechanism rather than not being in pain. What is the point in going around moaning about how bad I feel all the time... I have a couple of times cried at the doctors but this really isn't me and was more out of frustration than anything.

Regularly my husband says, why didn't you tell me it had got that bad? Usually when I have to concede that I need help dressing... because I don't want to be like this... My grown-up children can see me wince when I try to pick my grandchildren up and try not to jump in to help... I will let you know when it is too much!!! or of course, I won't drop your children just because I am being stubborn...

Anyway, I just thought I would write this in case anyone else was going through the same things... I am ok... really 😊

I am currently dealing with sore hands, wrists and neck and have just upped my steroids to 12mg and added Naproxen again to try and give me some relief. Obviously being on only 10mg of Methotrexate is currently not enough. I'm hoping to see the specialist in January so if anyone has any words of wisdom for me they would be gratefully received.

I hope you all have a wonderful Christmas and New Year.

[MrsNails]

Hello Mamamia

Yes l’ve been in a similar situation - l also tend to gloss over how poorly l’ve felt in the past. During Lockdown l wrote to my Consultant & explained fully how unwell l was/had been - he rang me up & sorted out a new plan of action - which improved me slightly - so l wrote to him again & they started me on Methotrexate Injections - and that’s done the trick……

But when you are in constant pain - it’s no joke. My recommendation would be to write down how you feel & check it again in a couple of days to see if it’s the full picture. Then when you see your Consultant you can show it to him…..

As you’re on MTX do you have a Helpline Number? The Nurse Practitioners are really very good, they will listen & give sage advice. So that is a consideration especially before Christmas weekend.

You need to explain to your family exactly how you feel & what they can do to help….

Kind Regards

MrsN

Let us know how you get on

[Mamamia21 in reply to MrsNails]

Thanks MrsNails... good idea to write it down... easy to forget how you were feeling a couple of days ago. No helpline number for MTX but as I am in Guernsey I am not sure if one exists...I do have a good Rhemey nurse who I can talk to. I am on a very low dose at the moment and hope when I see the specialist in January that might increase and help. I will be ok over Christmas and will certainly update in the new year.

[MrsNails in reply to Mamamia21]

The Rheumy Nurse - is who answer the HelpLine. Might be worth a call to her as she can go back to the Specialist. Just jot things down before you ring her - you’ll feel better just by having a chat….

Wishing You All The Best for Christmas & Yge New Year 🤦🏻

[SheffieldJane]

I think your own wisdom has come to the fore. This kind of review is immensely useful. There is no denying these symptoms. You need to get the yo yoing under control and start a programme of slow steady tapering - see FAQs but only when your symptoms have settled. You also need to accept this as a real illness that requires proper respect and care and time. There are no prizes for being brave in this situation - just worse illness. I hope your Rheumatologist is a good wise one. I do understand. I saw my Australian grandchildren for one day yesterday after 2 and a half years. I tried to be normal granny. Today I can hardly move. We can’t do it.

[Mamamia21 in reply to SheffieldJane]

Thanks SheffieldJane... I think I am my own worst enemy here... 😂You would think after 5 years that I would have accepted that I have a real illness... I am trying to work with my new Rheumatologist... a little difficult when she mentioned that she was my 3rd Rheumatologist...you are never given the time or opportunity to explain why in these situations. She put me on MTX so I have a reason to see her again in January. Hope to get a plan sorted then.

Glad to hear you managed to see your grandchildren even if you did pay for it today... Rest and look after yourself now... I have everything crossed that one of my grandchildren will be with us for Christmas... Covid permitting...

[SheffieldJane]

I think Mrs Nails note taking idea is genius. I tend to put the past out of my mind and forget when I have had certain tests or presented with particular symptoms. I am sure this is not building the best relationship with my Rheumatologist. It is a strategy for coping but not helpful during consultations.