Is good is the new awful?

[TTCC]

Sorry in advance - having a down day need to vent!

So today I got up and thought I feel quite good today which is great as the Humira seems to be working 😃

However and sorry to be negative but if I felt like I do today pre RA I would have said I felt awful! The last few months have been terrible with pain stiffness swelling and a DAS over 7 so today is good in comparison to that but compared to 2 years ago it is rubbish.

RA is so pants is this as good as good gets? (I know no one can answer that as everyone is different) I'm just having a hard time accepting I have a chronic disease with no cure!

[Vonnie10]

I feel your pain I am the same I think I feel good but in comparison to over 18 months ago, it's just horrible isn't it ? I want my life back how depressing what more can I say.

[LizzieR in reply to Vonnie10]

I want my life back too! If anyone works out how to manage it, will you let me know?!! X

[Gnarli]

That makes at least two of us! I just enjoy the "good" times as much as I can and use a selective memory to forget the not so good until/if they hit. I'll deal with the future if and when it happens. True. There is no cure. Yet. I have to believe that things could change in my lifetime.

J

[Mhairi54]

Totally get where you're coming from. I'd do anything to have my old life back.

[Entero]

I sympathise too and what often gets to me is the sheer randomness of the disease! There seems to be so little predictability- in fact none- and on the days when I wake up and feel dreadful it still comes as a disappointment and I rack my brain for what might have "caused " it. Then a while later( for no reason whatsoever) I'm better, until.... and so it continues. I'm still working on the "being with what is" piece but it does at least take me less time to adapt to the rubbish times now and do what I need to do to help myself rather than pushing on through in denial. None of this is easy but at least we have each other 😊

[Angieb1983]

Oh ladies I'm reading all your above comments through my tears, as I've only being diagnosed in last few months and my life has changed beyond all recognition! I was fit, mobile and worked in a job with SEN teenagers that I adored. Now I'm in and out of hospital, pumped full of steroids and have hardly any mobility at all! But it's the physiological effects of not knowing how much better all the treatment will get me. The I have to accept and change my life goals! The I cannot drive at the moment, I miss my life soooo much!!! I'm so sorry to hear you are all in a similar position to myself. I hope we all find the right combination of medication and can formulate a "new " life plan that fulfills our hearts and minds. Much love xx

[Beaches2]

Hi TTCC

I also feel really sad reading your post. It is very hard coming to terms with what is often a life changing diagnosis.

I've been diagnosed 4 years now, went through a horrible, horrible first year and then found a biologic that helps, so at the moment I'm ok. But after reading your post I thought about where I am compared to 4 years ago.

I remember reading early on that I would find a " new normal" and all would be OK, and I thought then that I didn't want a new normal, I just wanted my old normal back!

Although my RA is well controlled I'm not as I was, I don't have the same energy and I have achy days and occasional flares is joints....totally unpredictable so it puts me off making plans. I'm not as sociable as I used to be as I need to go to bed early and I guess people may think I'm anti social now. Then of course there is that constant fear that the drugs will/ may stop working and things will get bad again.

I don't care what others think now, I don't push myself to do anything I don't feel up to and I look after myself far more than I did.

I think my overriding feeling is that I'm grateful for the drugs we have today.

If things had continued as that first year, I would have no quality of life now and as it is I work ( part time) play sport ( not as much as I used to )look after grandchildren and can enjoy family days out etc........ok I'm not as well as I'd hoped to be at this stage of my life, but it could be worse. I've always been a contented, positive sort of person so this helps I suppose.

I think it takes time to accept and adjust. Sadly we have this diagnosis now and it's not going away, although I too am waiting for them to come up with a total cure!

Thank goodness for this site where we can all express our feelings without being judged.

Hope today is a good day for you.