Pain from falls

hi pips.

You yourself will know when your ready for sticks etc.

Two things when reading. I thought do you have orthotics? when I walked I had special arch support insoles made for inside shoes to prevent foot drop and be more secure standing.

sleeping and crying:- could very well be depression or fatigue. both can be side effects of md breathing. have you had your breathing checked. if your not getting 100% quality breaths this could lead to fatigue, headaches. being tired even when starting the day. having to nap. reduced quality breathing can increase trips and falls.

Hows your night time. Do you find yourself restless in bed. sitting up more than normal or preferring to be propped up in bed. headaches. Pale, cold skin or even bluish

Not sure who told you that MD does not bring pain, but I suspect they have no understanding of it. Many varieties of MD give paon and many folk with MD do not suffer pain. So you can be one of the unlucky ones like me who have pain. For me it is all over my body part from the right side of my face. Not necessarily all caused by MD but most of it. Please remember that each of us experiences MD in different ways, so you cannot predict whether you will or will not get pain or whether it will bad or barely noticeable. If you do get it you will quickly find out how and when.
Night time breathing can be a problem and thankfully you have had that examined, but waking up frequently may be a result of pain or discomfort in your joints, but whatever the cause waking a lot during the night is not helpful. It is always worth looking at why you wake up and what can be done about it. The oft quoted old mattress may be a problem, or it may be the mattress or pillows are not right for you. Like everything we do when we play this game with our MD it is always worthwhile looking at what is going on and keeping notes, mentally or physically, so you have an understanding of what is happening in your body. But Cat’s advice about depression and fatigue is important. I doubt that there is anyone with MD who have not had depression at some point, and the nasty thing it is it can creep up on you without you noticing it. If you have the slightest suspicion that depression may be the cause of some of your problems please do talk to someone before it gets bad. It is so much easier to deal with. As for fatigue, if you are feeling tired, maybe, just maybe you are doing too much mentally or physically, and looking at what is going on in your life might pay dividends. But may I say in all seriousness you are not an idiot for wearing pretty outfits, you are normal. You want to wear them to make yourself feel good, you do not wear them because you wear the brace then it will make you feel worse. Again , as Cat said, you will know when you are ready for your sticks and your brace and whatever else is thrown at you, and then you can wear your pretty outfits, and use a stick and thumb your nose at the world if they do not like what they see.
MD will take you many places with many forks in the road. You choose which fork to go down, you are in charge.

Mike

PS Have you had any help from OT at home?

It sounds like you are doing all the right things, but wading through treacle to get any where. Do chase up the OT, daily if you have to do. You can self refer. If they will not come out remind them that once referred they have a duty of care, if they fail to come to see you remind them that they are failing in that duty. I have had to do this many times (not with OT though) and it often helps to remove any log jams there may be.
Clearly pain is a major factor for you, as indeed it has been for me. Like you I have tired every pain med under the sun, and tried mixing combinations and working to find something that will work. Not everything will work for everybody, and because of their complex interactions you might want to see the pain clinic for advice and guidance. Initially the best they could offer me was counselling, having been a counsellor for some twenty odd years it seemed a little futile, but eventually I managed to see the consultant who put me on cannabis (Sativex). Despite the foul and I do mean foul, taste it has worked wonders for my pain. That may not work for you, but somewhere out there is a combination that will and they can help you find it. For me now pain, what there is that remains, is a fact of life and I cannot remember being pain free. As such I accept it and deal with it as best I can, knowing what will make it worse or better. Yes I take risks with it from time to time, mostly out of necessity and I recognise that I will suffer in the days to come. But that is my choice. I am in control.
Your other issue of tiredness is obviously a factor with ME as well as MD, but being made worse with poor sleep. I would totally support what others have said about this and possibly suggest it is time to revisit the sleep clinic for further advice, and look again at the things mentioned above. Perhaps in the interim consider how much ventilation you have in your bedroom. Poor ventilation means reduced oxygen intake, not good especially if you are not breathing properly. Is your door wide open, have you tried a fan, have you got the window open slightly? Little things can make a difference there and give you a starter for ten as it were.
I must say that you should not ever , ever have to justify yourself to anyone about your condition and your pain. The comments you mentioned that a colleague had indicated you did not look disabled I have faced many times, not least of which from our refuse collection people who were refusing to conduct my assisted collection as I did not look disabled. when I asked their boss for a copy of their medical degree and evidence of post graduate neurological training the problem went away. We should not ever have to do this, but currently our society believes we should be questioned.

Mike