confused

Glad to hear. Thanks

unfortunately I know what you mean. It just sucks. I get so angry that I have this,  You all seem so excepting.  Good for you.

Love your desription .lol

?I am opposite to Karen. I am down to 10mg. Tests have always been low (Dr doesn't share figures with me), but I am .always on the boarderline of pain. Forgot to take pred yesterday - 4 hours later, searing pain reminded me.

?Like Karen, I am always confused.

?I was going to ask Dr for Alzerheimer test last visit, but forgot

 

ha love humor

Karen, trust me, I've been angry - very angry, and I still am occassionally. You are not alone.

Time has helped me accept this problem, but I'm still not ok with it.

Getting this disease is like you have to go through the 7 stages of greaving. We are grieving that we have this and one of those stages is anger. I belive we have all gone through it and still occasionally get it again but less frequently.

Be careful that the anger doesn't consume you. Easy to do.

This forum is awesome for solace and questions.

You can fight against PMR and pred all you like - it won't make it go away or reduce the need for pred. In fact, it will probably make things worse because of the stress. Anger is very stressful on our bodies.

Use that energy to work out ways of getting round the downsides of both - we haven't given in to PMR, we have learnt to live with it and get on with our lives. It isn't the same, of course it isn't, but it is just a new normal. And however unpleasant PMR may feel, if you have to have an autoimmune vasculitis as a disorder then it is probably the one to choose. Other forms of vasculitis can not only be life-threatening, they are treated/managed with the same sorts of drugs that are used in cancer which are not nice at all. Pred looks a pussycat in comparison.

It's one of those things.  You can't hold back the tide, for example, or stop the sun from rising and setting.  BUT, to continue the metaphor, we can make sure we don't get swept out to sea (take our medicine) and we can stop ourselves from getting sunburnt (watch our diet and get our exercise) or lost in the dark (get rest and avoid stress).  

I haven't been angry.  But I have been very sad.  And still am quite often.

Hmm, I don't think I've been sad as such. Depressed, yes. Angry, yes. Frustrated, yes. Helpless, yes.

I feel so stuck between a rock and a hard place. I don't know if I can't/don't excersise more because I'm lazy or fat or sick any more. I am just not myself. I used to be so busy and active, always doing things, but now I just can't be bothered. I don't know if I've just lay down and given up or if it's the disease.

I'm so fat I can't do anything. Or is that an excuse because it's HARD. I hurt all over but is it PMR or carrying all the extra weight?

No matter how many times I tell myself I'm going to do something about it I don't. 

I

just wish it would all go away. Ok. I am sad.

I know how you are  feeling . i have  gone thru all of those emotions. BUt  i have decided to be very proactive. i go to a healing yoga  totally changed my diet. all organic no sugar, wheat, little diary. and starting to work  with corrective trainer for spine and  balance. we all know this

sucks, but we need to not let it ruin us. My goal is to be done with in 6 months.  i know it is not realistic but  just  maybe i will be lucky. please do yourself  a  favor and get proactive. my family is amazed how i am  tackling this. i say i have no choice. yes i get depressedand  so very  angry. as i have expressed on this forum many time. i hope tomorrow is a better day and  a new beginning  

I did exactly the same after I was diagnosed, and I did feel better, but it all just got too hard - so time consuming and I am so tired I can't be bothered. (not the word I'd usually use!).

 

i know it is hard. I have days like that.  i hope it gets better.

I don't know what you weigh Flip but 4 years ago I weighed 88kg at 5'1" - by anyone's standards rather a lot! I was on crutches because of an achilles problem (due to the GP using a mix of the wrong antibiotic and Medrol) and had spent 3 weeks in hospital to try to sort a severe myofascial pain episode which then triggered atrial fibrillation. I cut carbs drastically and started walking - at first only a few hundred yards into the village and back, slowly on crutches. We built up the distance - to the end of the village, round the short loop, round the slightly longer loop, round the long loop, and then the speed.

It is hard, very hard, but you CAN do it. Just VERY  slowly.

And if you analyse it all and decide that yes, you do feel sad, as opposed to angry or other emotions, added to the "can't be bothered to do anything" it is a real indication that you are clinically depressed and you need to talk to your GP in depth. I've been there too - and put on a lot of weight as a result, years ago - and it is a pit that is almost impossible to get out of alone. The trouble is that even that requires the effort to go to the doctor - so get your partner on side too so he aids the process of getting to the surgery and telling the story. I wish I could drop round and pick you up and take you to an appointment.

There is no surprise and no shame that you are depressed - many autoimmune diseases are associated with low mood, even depression. The stress of a chronic illness, of getting a diagnosis and then living with and adjusting to the limitations and possibly pain takes its toll and it is very common for people to become depressed. It is likely to be even worse for someone like you who was so active before - exercise is an important part of developing the endorphins that combat depressive mood. And your lifestyle has changed dramatically - also hard to get a grip on.

Pick up the phone and make an appointment - NOW!

I dont know why Flip, but your post made me put my computer down straight away, get out of the chair and go for a walk. Why did I do that Eileen ?  I never quite get round to the walking on a regular basis., but I did it today. How about some friendly trans Tasman rivalry Flip - who will be first to lose two kgs ?

I've lost 1kg since I got home from the USA last Saturday! Thank goodness for decent low carb food - hasn't been the exercise believe me!

In retrospect the (mistaken) diagnosis of osteoporosis turned out to be the best thing that could have happened to me at the time.  I suddenly felt I had an ailment I could tackle head on. Of course I rejected the scary drugs and upped my game with the exercise and the diet.  It took on a sort of life of its own.  Then, when I found out that the osteoporosis was really only what's termed osteopenia (low bone mass the correct term), I felt a great lightening of spirit.  Now I really felt I could do something to help myself.  And all the things I've done for my bones have also helped with PMR.

But I agree.  Sometimes after I've done all the stuff I need to keep myself healthy and sane, there isn't energy left to do other things, whether creative or mundane. 

I'm sure we were all angry at the beginning Karen! I know I was. It takes us all differing amounts of time to reach acceptance and even then I still have the occasional blip.. Of anger or sadness for what I have lost, but they don't last long because it is what it is.. And we must get on with it. It's not terminal and it won't last forever. Could be so much worse etc etc. It's a challenge and we have to step up to the plate and not let it beat us! Try to live life as fully as we can with whatever our current disabilities are and laugh as much as possible! It definitely helps. Good Luck on your journey Karen. X

Lawd I've missed you Eileen! :-)

My GP is away on holidays atm, but I'm seeing my rhuemy on Monday for my 3 monthly check-up. I'll mention it. I promise.

I'm 5'4" and probably hitting 120kg now. I was 78kg when I was diagnosed 18 months ago and thought I was 'big' then! I'm so fat I can't do up my shoes, pick stuff off the floor. How do 'fat' people live like this? 

I'm going to start another post about another, major issue that I have - self-infliced, but if I don't speak out others won't know they aren't alone.

In order to know if I've lost 2kg I'd have to weigh myself and I'm not sure I want to know what the scales say! lol

I am 5'2" and 80kgs. Eileen went walking on crutches - we can do it. I have been on low carbs for a long time with no weight loss, so excerccise must be essential - bother !

You lucky lass ! Did you cope with the flight ok ?

you are right. I'm just making excuses!

My daughter is like that - I wouldn't at my fattest. It was the hospital that forced me onto the scales (I didn't have any). I knew something was happening as my trouser waistbands loosened.

You did sport didn't you? That makes it all the harder, most swimmers put on weight when they stop if they don't cut the calorie intake at the same time - they are used to 4000+ a day.

At least you haven't put on weight?

But what do you call low carb? How much carb do you eat a day? 

Ooops - how rude, forgot the flight: I requested assistance at the airports. Absolute doddle and gets you through US immigration via the crew lines too!!!!! 

I did put on 5kgs. I was keeping an eye on it, but weight when on when I broke an ankle last year. All the old ways of losing weight are not working this time. Some days I have no carbs, some days a mere fraction of what I used to. I have had several falls and I think that has put me off walking - I can, but I have got very klutzy.

​I am off on holiday in Sept- it should be a great incentive to bite the bullet and excercise, but I am a little nervous of how a long air flight will affect me.

I did put on 5kgs after I broke an ankle, but it isn't budging. Some days I have no carbs, other days only a couple of mouthfuls.

?I am off on holiday in Sept and am getting a little nervous about the long haul flight and how it  may affect me.,  I thought it would be a good incentive to get me moving,

What i'm asking though is what YOU call "No carbs" - it is an important factor.

Blimey - what can't I write now! (It's OK I think I know!)

Weight that goes on like that is difficult to get rid of - and increasing the amount you move is not easy either. I asked what you were eating because what you THINK has low levels of carbohydrate or sugar isn't always. And it can make a big difference. But think how much more comfortable that long haul flight in economy class will be with a few pounds less on the scales!

Exercise - btw start slowly, so you don't discourage yourself - releases endorphins.  Eventually you will find you look forward to your exercise and don't feel right if you miss it.  

You know, sometimes a person just needs help.  You might not need any more medications (I suspect you don't) but you may need someone to talk to.  And eventually a walking companion?

That is what I would really like - to fit comfortably in that economy seat

I am starting with 3 lots of ten minutes walks. Of course today is raining and blowing a gale, but I am off now. Flip are you with me ?

There is a lot of evidence showing that talking therapies are actually better than drugs in depression - trouble is, in the UK getting access to affordable/NHS services is next to impossible. But I imagine the rest of the world is rather better. 

As for someone to walk with - definitely, but finding someone with the same expectations isn't easy.

Rather bad here.  You know the system is broken when suicidal teenagers have to wait for months to see a mental health professional, and many mentally ill adults end up in prison.