I’ve been having a hard time lately. I called the rheumatologists office I have been referred to and they don’t think I will get in until end of December to January now. When I called earlier it was late November. One month is a really long time when you’re in pain every single day of your life!
I think about if the pain will ever stop! I’m still pretty young, do I have to live with this my entire life? I can’t imagine dealing with it for another 40-50 years.
This pain is so isolating, I get so lonely inside this body, I feel like it’s a cage of pain. I can’t enjoy anything when limping around stiff or in such pain I can’t process my thoughts correctly. I lay I’m bed and think “is this really it? What’s the point of a life like this?”
Hey there. I am sorry to hear you are having such a crappy time. I went through something similar, still do from time to time but I am older than you. There is not a lot we can do regarding the appointment times but we can try and learn to cope and manage the pain the best we can. This can be anything from making an appointment with your GP in the meantime and getting adequate pain medication and any other medication you may need for other issues depression included, meditation, baths, hot or cold packs and most importantly a form distraction. Unfortunately depression is associated with chronic illness and it is just as important to get on top of that as well as the pain. They can exacterbate each other. I even went as far as getting a chronic illness counsellor. It can be really difficult to not focus on just being sick and not feeling hopeless but it is important for your overall health to find something. Maybe writing a journal about how you feel. Vent to friends and don’t hold it all in. Feel free to vent to me
Meg--I'm so sorry you're having a hard time. You're not alone in these feelings of anger and resentment and hopelessness. It comes with the territory, like Robyn says. Anti-depressants are an option and so is talk therapy. And reading is a good plan, too. I recently posted about a wonderful book "How To Be Sick" by Toni Bernhardt. It has really helped me find some peace in my illness. I have been able to start thinking about how I am not sick, but how I have an illness. It's a subtle change that frees me. You should know that I'm a BIG cynic so I don't go in for forced happiness or trying to think yourself better. You're diagnosed with PSA. You can't just will yourself better, or happy for that matter. This book has really allowed be to re-examine how I talk to myself about having an illness. In her book she writes about trying to find the positive in her own chronic illness things like how she actually likes her bed (she gets stuck in bed for long periods of time). She likes the view from her window, her husband brings her things, she has an internet connection, she doesn't have to do chores... you get the picture. In balancing out having a chronic illness with periods of acute pain and discomfort you must look for some moments of joy or humor. I got out of doing loads of painting in the basement this afternoon because y hands and elbows were so sore I couldn't hold the paintbrush. That's a victory!! I mean we all know it isn't, but I have to laugh at myself or else I'll not get out of bed. Ever!
You'll find your way in this, Meg. It just takes time. And it takes courage. And you have to be able to get up over and over and over again each time this illness knocks you down. You ARE stronger than it. The fact that you're here and talking about how you feel means that you're winning. On the days you feel a bit perkier just think about how depressed your PSA must be. I mean on a good day for you, your illness must be feeling so bad that it isn't working, it isn't doing its thing. On your best days your PSA is just worthless and pathetic. Even in a five minute period of time when you laugh and forget about living with this illness, you've beaten it. So laugh. Find something positive abut your situation--no matter how much pain or swelling there may be. And in that small moment know you've made your PSA a drooling mess of incompetence. Try to get some sleep, too. Things always look better when you're rested ;)
Sorry to hear you're going through a hard time. Have you talked to your doctor in regards to treatment? I'm wondering if possibly you could start Celebrex until you see your Rheumy? My sister has been starting to have pain and flairs and she was prescribed Celebrex through her GP. I've added Celebrex to my current combo when needed and found it to be a great relief and also takes down any inflammation, unlike the current MTX and Sulfa combo. Sending healing thoughts your way and wishing you some relief.
Sorry you are feeling so bad Meg… Its very tough having to go through all that you are. Some times things do seem hopeless, especially when we are hurting so badly. It will get better Meg please believe that.
You do need to make an appointment to see your GP and just let it all out, it doesn’t matter if you cry, swear, whatever just say it how it is.
Good luck, thinking of you x
Definitely get into see your primary care doctor. There are things that he/she could do to help you. A short course of prednisone would do you wonders. Add in an NSAID of some sort, a tricyclic antidepressant, and maybe something a little stronger like a lower dose narcotic for your really bad days and that should keep you going until your appointment around the first of the year.
This disease really sucks it out of you especially in the beginning. We all go through our rough spots, but as we grow and learn in this disease we do figure out how to function from day-to-day, and eventually we figure out how to live. All of that is stuff that will eventually come, but right now try to get into see your general practitioner. That's going to be your best bet for some relief, and it sounds like right now that's what you need. You need a break.
Just know that we're here for you, we've all been there, and we're all living proof that you can survive this and it can get better.
Thank you. I’ve been busy with school lately and trying to manage life in general. Luckily it hasn’t been as rainy here so I’ve been feeling as sore overall. I’m already on an antidepressant, cipralex, should I ask about something else maybe?
I really appreciate all of your advice and kind words, it means a lot to me I can rationalize stuff I am feeling in my head but sometimes emotions get the better of me and I think that the doctors have forgotten about me.
It’s a lonely place, isn’t it? It does get better when you get comfortable with your treatment. But of course, you aren’t there yet. But you will be. Not soon enough, perhaps, but you will be. The long wait for a rheumatologist is one of the unfortunate realities of our health care system, and you just have to be a patient patient.
It’s probably just as well that you’re busy with school, as it provides some distraction. But do try to get in to see your GP as soon as possible. And take some time out for yourself!
When you go to the doc, do you think you might need a stronger pain medication? Would that come in handy for the worst days?
Like Grumpy says, come and hang out here, a lot of us have survived the “breaking in” period where it all seems too much to bear. And like she says, it does get better.
Thinking of you!
I’m on the antidepressants for reasons other than this. I have dealt with depression and PTSD before and have gone through a lot of counselling and group work. This is the 4th antidepressant I have been on, and so far if has really worked the best for me. I’m on a pretty high dose as well. It was initially prescribed by a psychiatrist and has been monitored by my GP.
I know that some form of therapy would likely work I’m just stuck on thinking “if it doesn’t take the pain away, what is it really doing?” I know it’s not the healthiest way of thinking, I can rationalize that right now, but sometimes I just really can’t. Today I am feeling better but I’m not in as much pain, so it doesn’t feel like such a big deal.
Maybe I will look into cognitive behavioural therapy.
Oh, I’m so sorry that you are feeling this way. I have been having a similar time with pain lately, and I understand your thoughts and feelings too well. It will get better. There are some simply awful times with this disease, and this is one of those times. It will pass, and you will be able to get your feelings and thoughts back in control.
Call the Rheumatologists office daily, and see if there are any cancellations. Until then, go see your primary. See if they can give you a short run of steroids to give you a break. Maybe a mild opiate to go with it would be helpful too. Insist on help from someone, whomever will see you the soonest.
I use the tools that I learned in counseling to help me get through these dark times. It was really worth it to get that help. I don’t know if you are doing this already, but I encourage you to try it. It helps too. Take advantage of any and all avenues available to help with the pain. This is a good one.
Just wanted to say thank you again to everyone who replied, it means a lot to me. I have started feeling better just reading all these replies. I’ve been pretty busy with school and just trying to see the lighter side in general. Trying to see the humour in it. I’m usually pretty good at it but sometimes I forgot, only human after all
I completely know how you feel. Ups and downs. Sometimes I feel like a prisoner in my own body and get so depressed remembering what I used to be able to do. I am lucky that I can call my husband and cry on the phone if he is at work or my dad is a good listener most times. I try to stay away from people who are full of advice- it annoys me and they always make me mad in the end because obviously they -cough cough my mom - don’t know how I feel and always think if I just exercised more it would solve everything. Grrrr. But just having a hug or someone to listen and tell me it will be ok helps a lot. Also someone to tell me it is ok to take it easy. If you can get outside for a little while it really lifts my spirits, even just to sit in the sun. It sounds hokey but a journal to record the good things hat happened each day- just a few seconds each night - makes me stop and remember that I really have more happy things than I thought- sometimes I can’t stop writing! It’s like a food journal, without one I ear more than I think But my rheumy promised me that it takes time to fine the combo that would help me and he was right. I was getting so down. I am finally feeling better and I do think that adjusting my workload and thought patterns helped. I am not the same person but I can still be happy. I am so glad you are having better days! That’s one good thing ab a journal. When days are bad you can flip back and see the good days. Keep smiling and when you feel sad know that smiles are around the corner!
That’s a really good idea about the journal Tiger Girl, even if you only feel like writing down a few sentences or words. Flipping through all the good memories must feel nice
I will message more later