Have a moan

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   I think that this would be a good space for 'fellow sufferer's' (god that sounds like official jargon   ) to let off a bit of steam.

No one seems to understand how we feel or how we can get so tired just doing everyday things  

Why don't we come on here and get a bit of support from likeminded people - we know how you feel, understand about the frustration of wanting to do the things we have always done but don't have the energy to do it  

Well come on   join in and we can all have a good old 'moan' - it will make you feel better   

bbfn

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rosenam Members Profile Send Private Message Find Members Posts Add to Buddy List Groupie Joined: 26Jul2009 Location: Glasgow Online Status: Offline Posts: 44	Quote Reply Topic: Have a moan Posted: 19Aug2009 at 2:54pm
	I think that this would be a good space for 'fellow sufferer's' (god that sounds like official jargon ) to let off a bit of steam. No one seems to understand how we feel or how we can get so tired just doing everyday things Why don't we come on here and get a bit of support from likeminded people - we know how you feel, understand about the frustration of wanting to do the things we have always done but don't have the energy to do it Well come on join in and we can all have a good old 'moan' - it will make you feel better bbfn
	Rosena

rosenam Members Profile Send Private Message Find Members Posts Add to Buddy List Groupie Joined: 26Jul2009 Location: Glasgow Online Status: Offline Posts: 44	Quote Reply Posted: 29Aug2009 at 9:55am
	Hi Everyone Hope that even if you are not posting - you are still reading I have received my information pack and it doesn't make for very good reading Depending on your mobility ( mines is ok at the moment) it seems pretty grim going back to walking sticks/calipers or even a chair I had already gotten all of this information by looking on the web but seeing it in stark black & white seems to make it worse. Oh well - wish someone else would post so I know you are out-there bbfn
	Rosena

colinw Members Profile Send Private Message Find Members Posts Add to Buddy List Newbie Joined: 18Aug2009 Location: monifieth Online Status: Offline Posts: 7	Quote Reply Posted: 10Sep2009 at 11:03am
	It seems that we are all the same, we were the doers and people still expect us to be that, and of course we dont like to say no so we carry on and knacker ourselves. It must be very difficult though for others to see us "looking good" and unable to understand the pain and fatigue we suffer. I have been through every test and still cant be diagnosed with pps, stubborn doctors Colin
	colinw

rosenam Members Profile Send Private Message Find Members Posts Add to Buddy List Groupie Joined: 26Jul2009 Location: Glasgow Online Status: Offline Posts: 44	Quote Reply Posted: 10Sep2009 at 11:27am
	Hi Haven't been for any tests for years usually avoid the Dr's like the plague Had to go this morning though and saw a 'locum' - he has just referred me for physio have already been and they said they could not offer a service, only give me an exercise regime lol I can do less now than the first time I was referred Oh well - I just have to let her know as it is a telephone 'consultation' (what happened to sitting talking to people one to one?) It will probably take forever to get what I need and I'm too tired to argue at the moment I know what you mean about 'looking ok' so people don't think you have a problem (having a foggy day myself today) Keep posting bbfn
	Rosena

colinw Members Profile Send Private Message Find Members Posts Add to Buddy List Newbie Joined: 18Aug2009 Location: monifieth Online Status: Offline Posts: 7	Quote Reply Posted: 10Sep2009 at 12:32pm
	Hi, I know how you feel, I gave up two years ago going to docs after suffering for the previous ten years, I met my doctor the other day, not in his capacity as a doctor, but I spoke about pps his comment really annoyed me he said" thats probably what you have" Its recognised now as a condition on NHS sites so why cant we give a definitive diagnosis. seems if your an MP you can make people tell you what your condition is. Colin
	colinw

rosenam Members Profile Send Private Message Find Members Posts Add to Buddy List Groupie Joined: 26Jul2009 Location: Glasgow Online Status: Offline Posts: 44	Quote Reply Posted: 10Sep2009 at 4:36pm
	Hi Computer went on the blink had to get son over to fix it - it's a bit old I had no problem with my own GP - he even accepted some information I had printed from the net. If I had seen him today I would have had no problem Needless to say the physio couldn't help but she has made a referral to the local hospital to see what they can do to help - could take a couple of weeks though, meantime the ankle could give and I could hurt myself - oh well will have to be extra careful bbfn
	Rosena

Jean : Glasgow Members Profile Send Private Message Find Members Posts Add to Buddy List Newbie Joined: 07Oct2009 Location: Glasgow Online Status: Offline Posts: 6	Quote Reply Posted: 07Oct2009 at 11:32pm
	Hi Rosenam and Colin, I live in denial as the last time I saw a doctor about anything at all was 36 years ago! I am obviously a healthy person who was never off work and kept going until I reached 60. I am afraid I have the attitude "ignore it and it might go away". If I can't do something, I don't attempt it and then pretend I didn't want to do it in the first place such as climbing stairs (restaurants, shops, etc.) Even if I did seek help - what could they do for me? My moan is that I would rather not hear that there is nothing they can do so carry on with my limitations by putting my head in the sand. I now can't risk going to a hotel unless they confirm there is an elevator to all floors after last year's hotel in Oban which failed to mention that there was a steep spiral staircase just to get to the reception and the lifts. I have started a list of "user friendly" hotels in Scotland and may eventually type the list for those who wish a copy but I have still a lot to check out.
	Jean

rosenam Members Profile Send Private Message Find Members Posts Add to Buddy List Groupie Joined: 26Jul2009 Location: Glasgow Online Status: Offline Posts: 44	Quote Reply Posted: 08Oct2009 at 6:30pm
	Hi Jean I think we are all pretty much of that mind set - they pushed us and told us we could do everything everyone else did - and we did I have just gradually stopped doing a lot like decorating, gardening etc. I have three children two of which are strapping big boys so I just tell them it's their job now lol I am waiting for an appointment with orthotic, my ankle is now in dire need of some support and I have just had to give in and get help - either that or I may take a tumble, I think that would be worse. I now feel as if I am going backward - having given up the caliper at 16 - he ho what can you do. I have just resigned myself to it getting worse and just waiting to see how long it takes, meantime I will carry on with what I can do bbfn
	Rosena

Jean : Glasgow Members Profile Send Private Message Find Members Posts Add to Buddy List Newbie Joined: 07Oct2009 Location: Glasgow Online Status: Offline Posts: 6	Quote Reply Posted: 09Oct2009 at 8:14am
	Hi Rosena, I too am having intense pain and major problems with an ankle and sometimes the knee at times can be so painful that I can't touch it. Now for the BIG moan - it is not on my Polio leg but the "good" leg. I was told by an orthopaedic surgeon who was a friend (not as doctor to patient) to hang on to my knee for as long as possible. He and I knew what he meant as it is not lack of expertise we need to be afraid of today but MRSA. I will say no more on this site but I see you Rosena and I live in the same part of the country. Only a few years ago you had more than a 50% chance of catching MRSA in the orthopaedic wards in some of our hospitals and I don't knw if things have improved. I know of a few who are now completely housebound because of joint replacement surgery which had to be "undone" because of MRSA. If anyone knows if things have improved, please let us all know. Since I retired I have been a bit out of touch with such matters.
	Jean

rosenam Members Profile Send Private Message Find Members Posts Add to Buddy List Groupie Joined: 26Jul2009 Location: Glasgow Online Status: Offline Posts: 44	Quote Reply Posted: 10Oct2009 at 3:11pm
	Hi Jean A friend of mine from work has arthritis, before she goes in for any ops. she is tested for MRSA to see if she is carrying it and retested afterwards. I don't know if this is part of the plan the NHS has to stop patients catching/carrying this onto the wards. My friend has had a few ops over the past three years and is still in the clear. I have problems with my 'good' leg to, due to all the weight bearing over the years - it normally appears as swelling in the joint followed by the pain - I have never been assessed about the knee but was told that they would consider me for a hip replacement when I reached 50 - I never kept in touch with them and unless things take a severe turn for the worst, I won't. Just had the appointment through for orthotics - 09 November, will go there and see what they can do or what they can suggest, I had a list from this site of doctor's/consultants who treat PPS, one of these is at the Southern General, Glasgow, while I am there I will try to find out if he is still consulting there and how to go about seeing him, we can but try Nice to hear from you Keep posting and we may get some others to join in bbfn
	Rosena