Morning all. Sorry I need to rant with people who may understand my frustrations. And I thought of here.
I've had RA since my distant memories of teenage years. However I'm lucky and have been in remission for a huge number of years. Until 2 years ago. When bang it strikes again. I've received outstanding treatment from my clinician and zoomed thought dmards to settle on cimzia. However approx 8 weeks ago I developed a dead foot and random numb patches across my body. Again there has been no delay in providing swift treatment for this. I've received intravenous steroids and commenced oral ones now too. The cimzia has been Stopped. I'm awaiting investigations to discover if I have MS or mononeuritis multiplex. The blasted steroids have brought my dormant diabetes back into circulation to the point my stupid body seems to be falling apart. I'm ready to give up. I'm loosing hope and fight. Had a reality face smack yesterday when I realise it's not going away sigh I can't do this now.
This *&%$! disease can be so tricksy - we think we've got it sussed and pacing sorted when lo and behold! it morphs into some other bizarre presentation
Hold onto the fact that you've weathered the storm before, adapted and survived - and can do so again - but right now you need to rail against it, curse and moan and generally vent. And that's healthy - otherwise where do these feelings go? - they stay in the body and fester, 'dis-ease' indeed.
Whilst the steroids ease the symptoms like magic they can also lower your mood and bring other adverse side effects as you're finding out.
Try to stay in the moment and not look anxiously forward - nothing is changed by worrying about it in advance and it's exhausting at a time when you need to conserve your energy.
Know that you're not alone with this - there are plenty of us who understand what you're going through
Cece x
Thank you I have noticed my mood has plummeted. My fight weakened and I'm very irritable plus feeling like shite every day.
I've never thought of the disease morphing but like that idea it makes it kinda easier to cope with. Thank you xxx
Hello I am very sorry that your are your RA is showing its ugly head again, I have been unlucky in that respect where it has taken a couple of years to get to anywhere near controlled. I think maybe though for you it is worse, as you have had a few years are feeling well, to be reminded about the disease must really be difficult for you.
I today also have very painful lower back and at the moment can't feel my legs. I am sure it's just something in the Spine however it worries me as my hands are feeling the same as yours with some numb spots
on them. So I think we both have two wait and see what the fantastic consultants come up with.
In telling you how are I am feeling to try to see you are not alone, I am really thinking of you, and I hope we get to the bottom of this for you as soon as possible.
i find steroids amazingly helpful however at the moment the doctor doesn't want me to have any more for a few months, to see if the Humira is causing any of the problems.
I think If you can ,as much as you can , to keep positive, I know you feel that it's difficult to get through the day, but you are strong, you can manage, and try and keep the sorts of recovery at the front of your head.
But if you are struggling and feeling Down i found the NRAS helpline very helpful getting me the answers to my questions and just giving me someone outside the family to talk to. Also my GP was really helpful. And of course blogging on here because i found everybody here to be really helpful and kind, and of course understanding. Hoping you have a much better day today and sending hugs Axxx
Echoing on the point that you are definitely not alone. This is the perfect site to come and completely vent all of your feelings as everybody on here are with you 100%. Don't ever give up....we will NOT let this damnable disease defeat us....I know these words are easy to say and living through it is another thing entirely, but I too have been down where you are and coming on here with all the pain and suffering one feels with this wretched thing helps me get through another day....one at a time.
As Cece has said you've come through this before....and it sounds like your med team are on the ball in dealing with this latest explosion.
I hope you feel a bit better each day....sending prayers to you and hoping you get some relief v.soon. Big hugs xxx
I hate it when things gang up and land in threes and fours. But as Cece says you will need time and have to be kind to yourself until you readjust. Allanah set me right earlier today and so I hope she, Luthien and Cece are all able to do the same for you too. Tilda xx
I gave in.....
I just couldn't fight anymore and gave in, I'm back on metazapine ( antidepressant) and back on diabetic medications. I use my crutches daily to mobilise and rest frequently. This accepting that RA is here to stay and is systemically wrecking my health has had to happen. I have appointments to see the neuro guys who hopfully will shed some light on the whole drop foot and the expected length of recovery. I'm blessed to have good friends who while they don't understand what's going on as I don't tell them they are willing to give me a kick up the bottom if needed.
Today my body can do its worst, I've already accepted it crappy so move on!!!
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Rather than think of it as 'giving in' why not consider it as 'adjusting to a new normal' :-} For me my current 'new normal' has been wheelchair use post-surgery and elbows that have decided that this was a good time to go on strike!
We want to run away from suffering but in fact turning towards it and accepting that 'this is my life and it varies from day to day' brings with it the peace of acceptance. I'm not suggesting that this is easy, it takes time and conscious thought and practice - but when we accept that every life includes a degree of suffering, we can let go of the images of 'battling', 'fighting', being 'beaten' or 'giving in' and accept just 'being' from moment to moment and knowing that the more trying moments too will pass:-}
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