I’ve never really spoken to anybody apart from my family about my health issues and I’m finding myself feeling quite low so I thought I’d give this a try and see if anybody has a similar situation...
I have Ankylosing Spondylitis , diagnosed approximately 20 years ago, currently taking Tramadol and injecting Humira twice a month and I also have ulcerative colitis. Long story short, what they thought was a mass on my pancreas has turned out to be pancreatitis. I now have to wean myself off my azathioprine, which I take for my ulcerative Colitis , which they believe has caused this. I’m worried because every time I come off it I end up back on steroids as my ulcerative colitis flares right back up.
Does anybody else have similar conditions which get them down and get fed up with taking drugs and would like to feel normal again?!??
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Buddy27
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Yes, I think many people will be able to empathise. I have PsA that isn't responding to treatment, plus bowel issues caused by nsaids. It's grim isn't it.
Depression is a big part of any long term illness. Mornings are the worst for me...what about you? I find once I'm up, moving and walking the dog, things improve a bit. Also swim twice a week, that's a real mood booster.
I’m not sure I’m depressed, I just get low at times and frustrated and cross...that I don’t seem to be the person I used to be, and still want to be. Pain, exhaustion ....it’s just exhausting isn’t it
I to have anklossing spondlittis as well as rheaumtoid arthritis also uvittis in both eyes due to the as gets me down been on all the biologics on last 1 available know how u feel trick is to keep busy and stay positive hugs
Yes low mood and fatigue is definitely part and parcel of living with one or more long term medical conditions. I say that I have 2 jobs - my teaching post which pays the mortgage etc and my long term health condition self-advisor role which keeps me informed of what is currently happening with my health conditions, what latest research might help me and keeping on track with getting enough sleep, eating health-ishly and staying as well as possible - this sometimes is more full on than the teaching job!
As for ‘normal’ I’ve never been that and hear that it isn’t all that it is cracked up to be! 😎
Don’t get me wrong, I’m no manic depressive...I too work, have a family, 2 dogs and 2 cats....a normal life!!
What is normal anyway?
I think I’m just low because I’d convinced myself I had cancer too....and I’m obviously very glad it’s not, but, I would either have been cured or died.....being diagnosed with another condition on top of the others was just a lot to handle.
I will be fine and continue as I always have....just all gets too much some days!
Mine are teenagers now but my ulcerative colitis was diagnosed when my youngest was 14 months old
That was pretty horrendous, being really ill with 2 toddlers...but you just crack on don’t you...I always felt they were more important than how bad I felt and I only told them about my health issues s couple of years ago...not their job to be worrying about their Mum
Aye, it's not much fun having RD that's for sure. It's certainly caused me a few problems.... Along with RA, I also have a bladder condition, which means I get recurring infections that can become serious (have had sepsis twice) especially when I take any type of immune suppressing meds for my RA. So, to lower risk of infection, I have had to stop all meds that can help my RA, except for hydroxychloroquine and pain killers in the form of tramadol & paracetomol, which means that my RA is not well controlled. I also have RA related lung disease, which is rather worrying to say the least. Plus a couple of lesser ailments in the form of a rather nasty type of rosacea, and stomach issues, but that ain't too bad...not yet anyway!
Obviously I get down in the dumps on times, but how I'm not depressed is beyond me? I've sort of surprised myself by how I've managed not to sink into a deep depression, which is something I anticipated would certainly happen before I became ill. Must be something to do with all that pure Celtic blood flowing through my veins, or perhaps more likely due to switching off and sticking my head deep in the sand for long periods.
Yes, I understand. I have RA and take Methotrexate and Cimzia. I also have spasmodic torticollis so a lot of neck pain for which I took botox injections until Rheumy said no more. When one thing doesn't hurt something else does. I used to be so active, grandkids, church activities, gardening, cooking etc. I'm not depressed, I am in mourning for my old life
Hi and yes I think we are very normal to feel down from time to time with the complex pharmacology we take and loads of hospital visits etc. To say the least. We are only human. If one feels so down all the time, then a different matter and one to discuss with the GP, but I think we need to plan things to look forward to and get out and about as much as our conditions will allow. I always ensue we have a couple of new or even old faves (Victor Meldrew always gets me chuckling!) of DVD box sets to watch on dark evenings/weekends to keep the morale up. Almost at the end of a mega box set of Will & Grace. Time to order something new from Amazon. 😁 I wonder if you are on and off oral steroids that they are making the mood fluctuate? Those demons had a very strange effect on my mood and I'm quite resilient to the blues normally. However they did the job of getting me moving again.
Hi Neonkittie...I think you’re right, it’s all the hospital visits too isn’t it.
For me I think it just seems to go on and on...if it’s not my ulcerative colitis it’s my joints and now to be told I have pancreatitis too, I just feel like it’s never ending. I try to carry on as normal, to feel normal and in fact not many people know I have anything wrong with me.
I’ve been lucky in some ways, in that s the medication I take does seem to have worked as I’ve not had to take steroids too much! But now I have to come off my azathioprine I’m quite anxious about my bowels flaring up 😒
Here's some ASers with some thoughts to boost your spirits 👻 👻, Buddy27: 'ankylosing spondylitis and how to manage it': healthunlocked.com/nras/pos...
May be some practical gems 💎 💎 in there to add to your toolbox ⚒ 🛠 ? 🤔
.
If you're into 'mind stuff' to lift mood 😌 , have a look & see if any of these techniques strike your fancy: Meditation, Mindfulness, Movement, Breathing, Relaxation, Stress Reduction . . .: healthunlocked.com/nras/pos....
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Hoping things brighten 🔅 🔆 ☀️ 🌞 for you soon, Buddy27. 🙏 🍀 🌺 🌞
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