Why can't I accept this?

General Blog
1

How do you find the path to acceptance? I am still not there yet I still get angry and get up and make myself do because its what I have always done and or been expected to do. I glare evily at my new wheelchair as I walk out of the room as if challenging it to stop me.

When the whole world tells you for decades that your not sick your lazy, overweight, sensitive to pain, and its all in your head, you force a terrible guilt onto yourself and make yourself keep going until your ready to break from the pain, and then one day they tell you oh wow! we are so sorry! you are really sick! and have been this whole time! How do you accept that.

In 2007 my right foot swelled for no apparent reason and the doctor at the time said I was retaining water in my foot and that pressure caused the break and he couldn't put a cast on it since it was swollen so I should go home and rest for a few weeks. I went back in for 2 years complaining about the pain and being brushed off then in 2009 the same pain I was acustomed too hit my left foot and I was not prepared for that so off to the ER we went and yet again a break in the bone only this time the x-ray from 2007 right got added to the left and suddenly the right foot was forgotten completely to the doctors.

So here I am in 2011 having just been diagnosed with PsA and a form called arthritis mutilans and I have almost no idea what to do or say to anyone who asks me how I am. I was handed a bunch of phamplets and prescriptions and even given a wheelchair and I still can't wrap my brain around the idea that I am and have been really sick.

I am from Florida but have lived the last 11 years in Germany so all of the info I have been handed is in German I can read German though and I have the net and I have also read a lot about it in English, so why can't I comprehend this.

Why is my husband who used to be annoyed with my complaints suddenly looking at me like I am made of glass and why wasn't he this supportive when I told him all along I was in pain? Why now when the doctors tell him does he not only believe it but he is so angry that all along he didn't? And would someone please explain to him that I get it and he can stop apologizing now for not listening to me sooner. I understand the doctors telling us I wasn't sick made us accept their opinion. I forced myself against the pain and my better judgement to be what they and everyone else expected. After all to quote one doctors "mothers are not allowed to be sick"

Why are my oldest 3 sons clearing the table and washing the dishes the first time I tell them and not just leaving it until I get so annoyed that I get up and do it myself? How did they come to accept this so quickly when I still have not?

Everyone around me seems to have come to terms with this so why can't I? For decades I have been convinced I was sick and was really in the pain I said and I was, I have been angry and bitter everytime a doctor told me otherwise so now that they tell me I was right all along why am I not saying I told you so or feeling relief that I am not in fact crazy.

When does acceptance come? For years I knew I was sick I knew I was really in pain I knew they would one day discover what was causing me to feel the way I do, so now that they have how long before I come to terms and accept it too?

2

Hi Mamameli.

For me getting a diagnosis was, at first, comforting and a relief. Then I got MAD! Mad at Dr.s. Mad at Me. Mad at everyone and everything! I was furious that now there was a name for my 'whatever is wrong with you', people treated me differently. No one really had (or HAS for that matter) a clue as to what it really is or does - that changes daily, sometimes hourly in my case.

I grieve for what I have lost and work on accepting what will come and be lost in the future. I've learned not to dwell on it as much but to look for solutions to living my new life as well as possible as it changes and develops. Sometimes I think I have accepted something then find out I really haven't after all. This major flare that I'm in has taken me to the next level and I find I'm not quite as prepared as I thought I was. However, recognizing and understanding that is progress I feel. I find that interacting with others, whether in person or in cyberspace, that REALLY know what I'm talking about helps more than anything else I've found.

Acceptance has been and still is a one step at a time dance. I have to work on accepting things as they come, and PsA is a really really bad dance partner :)

3

I can understand the feelings you are having. I struggled for well over 20 years before a real diagnosis was made and am still struggling with another problem that noone understands. However I have learned to just keep on and that a smile even when you don’t feel like gets you much further than bitterness and anger. One thing I learned was to say when I have real pain that I can’t work around and the other is because we often look healthy and don’t have any fo the horrific diseases some have people really don’t feel we are sick. Chronic illness is just that chronic and since it is always here lerking I have learned to just put it aside until I can’t do then alot I blame it on the weather etc because I have learned how much weather and stress does affect it. Now that I am old I am learning to give in to it some. That is ok, for like you I have struggled alot of years. enjoy what all are doing for you. Put the past away and make the best of these new things all are doing for you. Part of them ignoring is they really didn’t want you to be sick. They will keep on hoping you’ll get better. For me I am better because I have made it this far and will keep on trying even though it is a little less easier. My kids still don’t want me to be ill and my husband needs me and is too sick anymore to understand. hugs. to you.

4

I wanted to cry as I read this post. I could have written most of it myself–it was so spot on to how I’ve felt over the years. I heard all those same messages until finally the damage showed up on x-ray. Suddenly, I had credibility. Suddenly, I no longer was lazy and simply complaining. At least that was true for a short while. Now I don’t understand why, even though I have a diagnosis (several of them, actually), there still are people, even members of the my family, who want to continue to deny the reality of my illness(es). It gives me an excuse not to accept my illness (not that I need too much encouraging–I still want to engage in denial, which we all know ultimately makes things worse. Sometimes, after a great deal of getting to know someone, I will finally say, “I have arthritis.” They don’t know how hard it is for me to say that after years of being ignored and disbelieved. And then I hear, “Oh yes, I’m getting it in my knee. But I just rub East Indian Tree Toad Oil on it and it goes away!” Gosh, I wish they had told me that years ago…I could have saved that money for all the specialists.

5

So, true, this is where I am also. I have always been affected with the psoriasis, and now at 41 I have the official Psa diagnosis. I feel like poo most of the time. I am not getting much in the way of sympathy or empathy in my camp, and I will continue to try to carry on til I can’t. I am 6’2, 150 lbs, so weight has never been my issue, I used to be energetic and loved hard work, now I can’t be energetic or work too hard, as I will pay for it when I finally sit down…I don’t mean to be a crybaby, but I hurt, I am tired, and I wish you could just “get it”, folks don’t realize that this disorder is not the same as the old wear and tear arthritis, they have no concept of your joints literally feeling as though they are on fire. How difficult it can be sometimes just to stand up and walk a bit. Nope you got laundry to do, dishes to wash, floors to sweep, tubs to scrub…your rhuemy knows you have to be in pain, but he doesn’t do those kind of med’s, you can’t afford to see them both, acceptance is difficult because this might be as good as it gets and the unknown is a little scary…

6

So often as you yourself have said, I need to this, I need to do that. I myself am in a very high level of pain,but again if I feel up to doing my housework,laundry, cooking etc. I will do it. Otherwise it waits until the next day. Yes my family as well is very supportive. You have to keep telling yourself that this is what I am going to do today and pls. dont' feel badly if it doesn't get done. You have lived your life all along with the fact that your supposed to do everything so now you have to repeat to yourself, everyday if not a couple of times a day, I might be able to do some things. Perhaps you could speak with someone (outside of family) and no I'm not saying a phyciatrist. Even a support group to help yourself get over this unbearable hump. You know your not well and as you said you knew something was wrong all along, but you werent' 100% certain. When in fact the actual words are said to you, its' like walking into a brick wall. You had your beliefs but not for certain. This is why you are feeling that the string should still be attached, but they are not.

Accept the fact that you were right all along, I know its not that easy. Try and little bit of exercise each day, pls. dont' go overboard. It could also be the wheelchair sitting there looking at you. If you dont' need to use it put it away sight unseen. This could also be a main factor of your negative thinking. Its' like "hey I'm here" use me. Perhaps it was put in front of you prior to what you found to be the problem. You didn't mention using it at all times, would a walker be more appropriate. You are berrating yourself. Remember as well that years' ago ppl. were put away because of illness' that nobody could explain. People had Alzheimers' and were put away, the family shunned them because of their mentality. Thinking them crazy. Now there is a "word" for it" and their is help for those now. Now they dont' really know what causes' Fibromyalgia. They give you meds' to control the pain but after a while they dont' work either. Look at yourself in the mirror daily and tell yourself you are a wonderful, loving and caring person, it does finally set in and you believe it. You are a good person even though you have a disability and dont' let others' persuade you to think otherwise because some will. Let the water run down your back. When ppl. cant' see something, they think to themselves' as well as out loud whats' wrong with her. Check in your phone book under Therapist and make an appt'. There is nothing wrong with this. Speaking to a stranger, shedding tears', saying more than what your saying to your family because you dont' want to let the tears fall, this is where a therapist comes in. Make a journal, write how your days' went each day. Was there improvement one day and not the next? Your family is there for you, dont' shun them they want to help, let them. You have done everything and more while you were well. When they are making dinner, cleaning, whatever if it bothers' you at this point go to another room in your home. This way your not watching and thinking this is what I should be doing. Well now you cant' so pls. except their help without feeling bad. Be so very thankful that they are there. So many ppl. have no family, who looks after them, a Nursing Home. Remember you are a beautiful, wonderful and caring mother and wife and when you can do small chores do so, if you cant' you cant'. Prior to getting out of bed in the mornings' do a small stretch, easily as this is not what you used to do. If I could meet you I would wrap my arms' around you! If ever you need to speak wit

7

at last i am not alonebecause i am the same just one after another but you know what i do its very simply but its works for me just get paper and pen and write to whos is getting u mad be it yourffamily the doctor or who put it in an envovle and next tear it up and burn it will you tell me how nu got on regards margaret