Disabled people
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Hello

bambam Member Posts: 331 Pioneering
I just wanted to say hello to everybody out there. I hope all of you are in your bed sleeping since its the middle of the night now in the UK. I hope everyone had a good day. My day was pretty good. I'm still new here and I hope I'm posting in the right place, if not please tell me

Replies

  • phoenixphoenix Member Posts: 6
    Hello. Glad to here that your day was pretty good.yesterday was a bad day for me in terms of pain fatigue and stuff but today is a new day and I guess we would take good days for granted if we never had bad days. hope you're OK. I'm new here too. Signed up yesterday so I'm hoping I'm doing this right and you will be able to see it 
    Take care 

  • bambam Member Posts: 331 Pioneering
    That's funny we both didn't know if we did it right. if you don't mind me asking what is your problem? There is a lot of pain with MS too. Sometimes, well most of the time you just have to try to ride it out.
  • phoenixphoenix Member Posts: 6
    I suffer with Ehlers Danlos Syndrome, postural orthostatic tachycardia syndrome (POTS), chronic fatigue syndrome etc... the list goes on. The same applies to my disabilities ( having to ride it out) but I am grateful for the little things that can help  
  • bambam Member Posts: 331 Pioneering
    I Googled it and I'm sorry I didn't really understand what it was. What exactly is it? I'm not trying to be rude. I just didn't understand it. Maybe I'm also just having an MS too
  • phoenixphoenix Member Posts: 6
    Ehlers Danlos Syndrome ? it is a condition effecting connective tissue. symptoms include frequent joint dislocations, subluxations ( partial dislocations), sprains, chronic generalized pain and fatigue etc. 
    it is caused by a faulty gene which governs collagen 
    there is no cure but treatment includes physiotherapy, occupational therapy, pain management and  psychological therapies such as cognitive behavioral therapy and counselling ( which is sometimes offered to help someone come to terms with diagnosis) I am trying hard not to explain it in medical jargon but finding it challenging as this is how it was explained to me. 
    I hope I have managed to clarify it for you 
  • bambam Member Posts: 331 Pioneering
    That sounds extremely painful and horrible. I just recently went through a shoulder injury and my shoulder became so bad that it would dislocate 3 - 6 times a month. It would always just pop right back in like a rubber band but it would hurt for days if not weeks. I also have 4 pins in my left hip and three pins in my right hip. I know how much those things hurt me your physical pain must 
    be horrible. The one thing I always hated most about being sick was having people come up to me and say don't worry God has a plan for you. They sounded like my pain was almost insignificant. I had never heard of that disease before. I know how difficult my life is because of MS and then I hear about how difficult your life is. I almost feel like I'm whining about having MS
  • phoenixphoenix Member Posts: 6
    Shoulder dislocations (in my opinion) are the most painful. My right shoulder dislocated for two hours yesterday. My support worker rang the ambulance and I thank god I got a paramedic who had been trained in how to relocate joints.
    I decided to do some research into MS as I feel my lack of knowledge may cause offence. It sounds equally as painful and horrible. I couldn't help notice similarities in the two (MS and EDS) both feature pain, fatigue and bowel and bladder dysfunction and muscle spasms and weakness.  I apologize if this is not correct I looked on NHS choices as that has proved to be a reliable source when I have looked into my disabilities.
    Unfortunately patronizing and derogatory comments are something I can easily relate to as I am sure a lot of people could who suffer from chronic conditions. I personally have had my fair share including the one you mentioned "don't worry, God has a plan for you" I have also been told to "get over it" and "maybe you should pray more or gain some weight"  as well as a long list of other ridiculous comments. I have found these sort of comments unfair, upsetting and deeply offending. However I have learnt to not let it phase me. they're lack of understanding and sheer ignorance is their problem, not yours. so sympathize with them instead. In my opinion people generally mean well... but go about it the wrong way.   Once a guy came up to me claiming that if I put two table spoons of salt in my glass of water and drink this 8 times a day I would feel miraculously better ! My response to this was to laugh at him tell him to do his research and then go about my day. My point being do not let anyone pull you down. :) 
  • bambam Member Posts: 331 Pioneering
    This all sounds like a good way to get heart attacks. Yes MS can cause bladder and bowel dysfunction. I I've been really lucky and really haven't had those issues yet. The pain is intense. Sometimes you just don't want to get out of bed. Shoulders are pretty easy to pop back into place. I've always been lucky and my shoulders have just popped right back into place. It really does almost feel like rubber band. I know when they don't pop back into place it's an extremely painful injury. I've actually had someone tell me that my problem was I just didn't try hard enough. If I just tried that little little bit extra. It was funny when I first got diagnosed with MS they asked me if I wanted to see the chaplain. I thought what the heck I'll see the chaplain. He showed up four days later and he said let's pray and he grabbed my hand. He said okay Robert God has a plan for you and I told him that the reason God didn't have a plan for me was because my name wasn't Robert and then I kicked him out of my room.
  • galvin66galvin66 Member Posts: 18
    phoenix said:
    Shoulder dislocations (in my opinion) are the most painful. My right shoulder dislocated for two hours yesterday. My support worker rang the ambulance and I thank god I got a paramedic who had been trained in how to relocate joints.
    I decided to do some research into MS as I feel my lack of knowledge may cause offence. It sounds equally as painful and horrible. I couldn't help notice similarities in the two (MS and EDS) both feature pain, fatigue and bowel and bladder dysfunction and muscle spasms and weakness.  I apologize if this is not correct I looked on NHS choices as that has proved to be a reliable source when I have looked into my disabilities.
    Unfortunately patronizing and derogatory comments are something I can easily relate to as I am sure a lot of people could who suffer from chronic conditions. I personally have had my fair share including the one you mentioned "don't worry, God has a plan for you" I have also been told to "get over it" and "maybe you should pray more or gain some weight"  as well as a long list of other ridiculous comments. I have found these sort of comments unfair, upsetting and deeply offending. However I have learnt to not let it phase me. they're lack of understanding and sheer ignorance is their problem, not yours. so sympathize with them instead. In my opinion people generally mean well... but go about it the wrong way.   Once a guy came up to me claiming that if I put two table spoons of salt in my glass of water and drink this 8 times a day I would feel miraculously better ! My response to this was to laugh at him tell him to do his research and then go about my day. My point being do not let anyone pull you down. :) 

  • galvin66galvin66 Member Posts: 18
    Phoenix, so sorry I pressed the wrong button and all of a sudden I have re posted your post aaaaaaahhhhhh, gosh I hate technology.  Anyway I totally agree with you and bam, over the last 34 years (I'm 50 now), I have had every type of fun, stupid, religious, herbal, hands on etc etc help offered. Oh by the way I'm Catherine (just joined today)......... My spine is crumbling, several ops, chronic morphine type pain, lovely hey,,,,,, ehhhhh NO...... I usually use humour as a way of coping with my pain, it does help a lot when you are round people who shout at you when you park in a disabled space "why are you parking there, you are too young to be disabled, prove it???", I have had loads of abuse over the years.  When I was in my 20's I would cry and run away!! now that I am 50 I have very thick skin and say to people, "have a day in my shoes, then tell me if I need that parking space or NOT"....... Mind you I mostly feel sorry for them for being so ignorant, ha ha.....anyway if you are ever having a poo day, text me
  • bambam Member Posts: 331 Pioneering
    I know I have a lot of poo days and would love a new friend. I don't get a lot of **** about parking in handicap spots unless I forget to put my placard in my window and someone sees that I don't have one in my window and they think I'm just trying to take some poor disabled persons handicap spot. Then they give me the dirtiest looks and I'll grab my placard and I'll wave it in the air and say see see see I really have one but by then they've already judged me. Hello my name is Bam and welcome to our little community or our a little piece of the world
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