Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Before u were diagnosed, how did u keep spirits up

I just don't know how to do it.. How do I keep my spirits up? I wake up every morning with such sadness and depression. I just can't get over where I was 14 months ago, on Miralax as my only med, and running 8 miles every other day... biking 30 miles.. etc. Now, I don't even have the motivation to do more than lie on the couch. I try and then pain ensues in my legs, so now I am reluctant.
I see a therapist.. who has helped and we are working on cognitive therapy, but I just dont find the joy right now.
Did you try and change up your routine? I do the same thing every day it seems in the morning, and I know I have the computer addiction, as it is the only thing I feel giving me this false sense of some control in finding what is wrong with me. We used to love to go to the wine bars and go for wine tastings and I even considered myself a little bit of wine snob ( in a good way) as I loved to try Malbecs, Granache, Pinot Noirs, Shiraz, love Australian and Spanish wines. Now, with the meds I am on to "try" and control the pain, I can't have wine. I am/was a one-drink girl. A lightweight. So, even when we did go out to enjoy wine, I enjoyed my one glass. Now, that is out. I am/was a musician/jazz guitarist, and the back of my thighs hurt so much that I cant sit long to play my new Gibson... so it seems like what I enjoy the most is gone.. what do I do? sports, music, wine.. I want those back. I dont want to continue to feel robbed. any ideas?
I don't know how to not be angry. I was dealing with pudendal neuralgia as my "only" illness up until last Nov when a lady did not yield and hit us and I have not been the same ever since. I don't know if it was a catalist to this problem.
I have a high ANA, but have been tested there, yet I worry that there is someting that hasnt been discovered. All I seem to do is stress out, find no joy, and dont know what more to do. If I could be in a hot bath 24/7 and take the tub with me.. or have a heating pad permanently implanted into my body I would.
I suppose what I am worried about is that with this leg pain going on for 3 months now with no end, problems with pain walking etc.. I am worried that it is arthritis/AS/and some other AI or neuro disorder.
How do I hang tight, keep my spirits up etc.. until I see the drs at the Mayo?

Thats a difficult question to answer. We all have our own ways of dealing with pain and limitations.I just used to carry on as normal as I could . The pain is something you learn to live with Im afraid if you have AS its a part of your life. Im sorry your finding it so hard I always think its such a shame that any young people should get this. Try and keep your spirits up.
Kevin

Thanks Kevin. I appreciate your kind words and I do hope you are feeling better today.
I have been a pretty all or nothing girl.. so i often feel like either I am all well or seriously ill.. i am not good at the "in betweens" when those times hit..

I know when I first started having issues I went thru the stages much like greiving a death. And believe it or not it will get better. I stopped at the being very angry at AS for a LONG time. I didnt think I was the same person that I was, I felt like I lost so much of myself. Now I have found new things that I enjoy. I too ran 15/20 miles a week and that had to be stopped I couldnt take the pain any longer so now I have a rowing machine, yes its not the same but I am dog tired when I am done. I used to race our catamaran all summer long, now I just go out for a cruise. Dont be too hard on yourself, this didnt happen overnight so dont expect to be able to deal with it overnight either. I read lot now, do some light gardening, walk my dog. Its hard yes but it does get better...


Angie

Aww...sweets... I'm sorry I don't have any useful advice. But if you do find the answer to your question, please fill me in.

i'm still not unequivocally diagnosed, so that's not really what gets me down.

and my pain is very cyclic so i just try to hold out til the worst of it is over.

and yes, even when doing well, can only stay that way if i'm careful of a lot of things, but i've learned to substitute. like take a walk instead of run, bike instead of swim. whatever i can do. and soon the new activities and interests take the place of the old. just keep finding new things that give me enjoyment. i think this happens naturally as we get older anyway, just maybe not so dramatically.

like this summer, really got into the photography, that's something new in my life that has given me great pleasure. so while i used to garden, now i just enjoy the fruits of hubby's labor and take lots of photos of the garden.

or, if i can't take a walk for months at a time, then when i can again, i so enjoy and appreciate it.
or, if i can't sleep due to pain, so enjoy that when i can again.
i've really learned to appreciate these little things when i get them back.

and when things are really bad, not only do i count down the days, sometimes, i literally count down the hours, kind of let the time pass,
and do all i can to get some comfort.

one other thing, having things to look forward to:
so for you, Mayo, is something to really look forward to.

but ultimately, i guess we each find our own unique way,
these are just some of the things that i do

Sorry you feel so bad. do you read all of these posts? They make me feel fortunate for what I do have and for what I dont have.Somehow the posts are like a kind of medicine bag. Also, like this economy makes us rethink our expenses, Pain also helps us rethink our activity. Dont just give in but make compromises. Switch one activity for another. And be glad that you have some of your answers to your pain in time to fix them. Some people I know from my past suffered for 30-40 years with A.s. before they got any answers. Imagine wondering what your cursed with and how to deal with it for 40 years.! Wow! In the past they just didnt have the answers or the compassion. Im so thankful for the time that we live in and that there are so many more answers than used to be.Big hugs to you and a big hang in there and a prayer and a hope that your meds kick in and if they dont then hope for a better solution. Lynne

it was eleven years between onset and diagnosis . . . and I escaped into novels. And generally told myself that if the doctors said nothing was wrong with me, they were right, and it was all in my head and I was a whiner, so I worked 75 hours a week with violent horses, got bucked off a lot, broke a lot of bones, got several concussions, guided hunters, and basically abused the crap out of my body because I was in denial. Oh, and I sobbed in the parking lot after every single doctor's appointment that failed to produce a diagnosis.

I'm not really recommending this as a therapy plan. I'm very glad I got all the experiences I got, like being a professional horse trainer (my dream job) before I learned that my injuries never heal.

I DO recommend that you don't give up wine. You need to continue what you love, even if it means you sacrifice your health a bit . . . if wine tastings make you happy, see what you can do to make it possible. It might mean switching meds, it might mean skipping your meds for a day, but don't give up what you love, especially if it's something as non-physical as wine tasting . . . that's SO work-aroundable. Things like training horses and mountain climbing are tougher hobbies to continue. Running 8 miles is tougher to continue . . . you might not be able to keep that one, but you can keep the wine tasting with minimal effort. (comparatively minimal)

-Bridget

I feel so bad for you the thing is, we have all been there! Sucks to be there though You just need to find enjoyment in new things! I know that is the hardest thing at this time but that's what we have! You will surprise yourself with all kinds of new stuff! It can be fun! I promise. Like I always say "shi* happens to good people". Its true! Also I have read that an accident of any sort that even slightly injures your back can bring AS on. The thing is that you were carrying it already. Sorry but I will continue to pray for you!

THESE ARE GROWING PAINS.You are being molded by God to fulfill other purposes in a strange and forceful way. Thats my take on it.

I don't know if you're diagnosed with anything- before I was, I had periods of such depression, one of the only things that stopped me from offing myself was fear of death!

I am so happy- I haven't had a drop of depression in years and I don't take drugs (other than the 10 wk pred taper I'm on for inflammation). Upon diagnosis, the light switches on and you can see what's been knocking you around in the dark so badly. And it's time to strike back.

Know that you will find this.

Sooner than later-if you're not diagnosed. When I heard some of the terrible possible consequences of my condition, it bothered me for a bit, but I got so proactive with my life because of it and was so happy just knowing.

If you aren't diagnosed, know that this total breaking of self is going to cleanse you. Ask God to put in front of you what is next for growth. Steadfast.