Doing Damage Or Not

Doing Damage Or Not

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Posted on 9 February 2006

Hi

Why is so hard as you get older to get anyone g.p or any other health professional to give you helpful advice.

I am 32 I have many of the symtons of cp and ageing a few years ago my left knee was painful and swollen the gp sent me for a scan which showed nothing.

In the last week both my knees have started to hurt more or less constantly a friend who dies massage says he can feel the muscles down the sides of my knees are tight. But no one can answer my question of well am I doing more damage than good by walking should I be using the wheelchair more? Or will that cause other problems.

If health professionals can't give me the information how am I suppose to make an informed decision on the best thing to do. At the moment pain in my back hips and knees keeps me awake often even after taking painkillers which just makes everything harder the next day.

All I want is for the pain to go away and some more definate answers rather than we don't know only you can make that decision. No I can't if I haven't got the information to make an informed choice.

Sorry to rant but I'm currently frustrated, confused, scared and running on about 4hrs of sleep!!
Any thoughts/advice gladly received.

Helen

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Posted on 9 February 2006
#1

Hi

Why is so hard as you get older to get anyone g.p or any other health professional to give you helpful advice.

I am 32 I have many of the symtons of cp and ageing a few years ago my left knee was painful and swollen the gp sent me for a scan which showed nothing.

In the last week both my knees have started to hurt more or less constantly a friend who dies massage says he can feel the muscles down the sides of my knees are tight. But no one can answer my question of well am I doing more damage than good by walking should I be using the wheelchair more? Or will that cause other problems.

If health professionals can't give me the information how am I suppose to make an informed decision on the best thing to do. At the moment pain in my back hips and knees keeps me awake often even after taking painkillers which just makes everything harder the next day.

All I want is for the pain to go away and some more definate answers rather than we don't know only you can make that decision. No I can't if I haven't got the information to make an informed choice.

Sorry to rant but I'm currently frustrated, confused, scared and running on about 4hrs of sleep!!
Any thoughts/advice gladly received.

Helen

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Posted on 13 February 2006
#2

Hi Helen,

Seen a number of your posts, This one is similar to my experiences - No one seems to be listening to me about being in pain. I am Amy, 27yrs old and since saving myself from falling down a few steps 2yrs ago, have had a lot of pain in my upper back. Been to physio, doctors, pain management clinic, been on painkillers, nothing helps. Finally a consultant said he would refer me to a neurologist, am told this takes months.

Running out of patience, frustrated, angry and scared. Am so scared I keep on going doing everything I normally do, as if I stop am worried that working hard to get as far as i'm today gaining independence will all be for nothing -to me anyway.

Am studying at university but like everything else it is mega difficult , hurting so much you can't concentrate, just want to scream, things were hard before.

Sometimes, like now think of giving up as people might take notice and understand we're really hurting then, but why should our lives have to stop.

I'm sorry, as mad as you are.

Take care

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Posted on 14 February 2006
#3

Hi Amy

I know what you mean about giving up but try looking at it another way. Just over a year ago I made the decision to give up work as I was so tired some days I would walk in the door and go straight to bed to tired to think, cook or even string a sentence together.

My employers were understanding I was working part time and had even reduced my hours but it wasn't enough to help stop the problems with my cp.

My parents couldn't understand why I was thinking of giving up work but I pointed out I wanted to have a life rather than an exsistence which is what I felt I had when I was working. I pointed out that there were things I wanted to do places I wanted see etc while I still could. And not work until my body wouldn't let me do anything and then be stuck. I think if I'd let myself get to that point then I would of really felt I'd wasted my life etc.

Stopping work really wasn't an easy decision to make as some people did see it as me giving up. But the friends closest to me could understand and supported me in my decision.

It hasn't been easy and I can't say it has solved everything I still have good days and bad days still get very tired and have pain but at least I can work my day round that now and if I want to sleep in the afternoon I can. And at least I am able to now have a social life and do other things.

I realised a year or so ago at the end of the day you have to do what feels right for you and not worry what others will think of you. At the end of the day in my heart of hearts I know I made the right decision for me, and if people don't like it that's their problem.
I understand where you are coming from but don't be too hard on yourself that you end up missing out later in life.

Take care

Helen

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Posted on 14 February 2006
#4

[quote=panther,Feb 14 2006, 10:15 AM]

Helen,

What kind of job did you have? What do you get up to now? You seem more knowledgeable than I am about my cp. All my life know its been with me, only ignored my disability and made the most of things, socialising with friends , trying new activities, proving to myself and others I can be independent, been living in a flat alone for nearly 2yrs, am at uni, 3yrs ago ventured to Canada on my own despite the barriers people put up.

Am studying for a PhD, can be tough, no-one warned me about cp and ageing. Of course I know people get old and suffer with pain, but we're still young, surely this isn't right.

I wondered if you wouldn't mind talking more of your experiences, would love to hear more about you.

Take care

Amy

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Posted on 15 February 2006
#5

Hi Amy

Before I started having problems I was working as a library assistant, lots of standing up and walking around carrying things I'd spend most of my day standing up. I'd started to get back pain in my lower back and I guess I adjusted my walking in some way to stop it.

If I came home from work tired I just put it down to a long day then those days started to become more frequent and I'd be that tired all I wanted to do when I got in was sleep and I would often not have something to eat as was so tired.
Eventually I woke up one day and found I couldn't stand up I'd over done things that much that my body had just decided it was going to make me stop. I also had a lot of pain in achlies tendons as well as back pain.
I spent most of that week crawling around my flat or sleeping. Weekends became a time when I'd sleep most of the time if I wasn't working that week just to have the energy to go to work the followimg week.

In time I reduced my hours and also had a support worker working with me for some of my hours, but after another year I left in total I did about 5 years in that job which is a lot of strain on my body I suppose in hind sight.

I then worked for social services for 2 years but that was shift work and eventually I left signed off sick due to work related stress. After 6 months off sick I then got a job working afternoons in my local whsmith store. Again I went back to standing up most of that time on the till. Then I reduced my hours down to 4 afternoons a week as I was getting swollen ankles, lots of pain in legs and back and was being signed off sick by my gp every 6 or 8 weeks for a few days because i was exhausted. After just under 2 years I decided to leave.

As I've said it was a hard decision to make but I wanted to do other things well I still could. Now I take things a day at a time and although there has been some improvement in the amount of pain and tiredness etc it has been very slight.

I don't regret stoppimg work as now I can see friends and visit places again and I'm not trying to juggle work and housework and not having the energy for anything else.

I guess for a long time I was like you my cp was there but it didn't stop me doing things I guess I was possibly just brought back to earth with a bit of a bump all those years ago, and that time of not being able to walk through having over doing it frighten me so much i never want to end up in that position again.
Living with cp is a bit like a healthy diet I suppose do anything and everything you want but in moderation!!!

Take care am happy to chat some more if you'd like to.

Helen

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Posted on 16 February 2006
#6

Hey Helen,

yes, I would like the opportunity to talk to you more, do you ever use msn? I don't know if its the same for you but I've difficulty with motor movement affecting co-ordination so everything takes effort to do. Learnt to do most things myself and still learning. Have a carer in everyday to cook me a meal, prepare lunch for next day and fill bottles of drink. I know how to cook but can't physically do it. People annoy me not simply understanding, saying you're 27 isn't it about time you could cook.

These last few weeks seem to be really exhausted to the point that all my energy disappeared the other day, it was horrible couldn't do anything, ended up laying down most of the day. Never felt like that before, felt helpless, feel a bit like that today although really need to finish some work I said I would email my tutor. Right now all I wish I could to is sleep for a long time with no questions asked from anyone, fedup with explaining why I'm tired.

Thanks for listening

Amy

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Posted on 16 February 2006
#7

Hi Amy

I do use msn and yahoo but I'm not sure we will be able to give out details here without it being moderated!!

I don't have problems with co-ordination mine are all to do with walking and balance and I can't for example carry a tray with both hands as it makes walking difficult as I tend to hold on a lot to walls and things to compensate for bad balance.

I fully understand what you mean about feeling so tired I have been in that position many times and I get tired very easy now. I don't know if you downloaded the cp and ageing leaflet from scope I mentioned but fatigue is mentioned in there.

The tiredness was one of the first things I noticed and it is hard to change your life to accomadate it I know even now I get really frustrated at times. Maybe you need to look the possibility of maybe giving yourself a day off every now and then to let yourself rest so you don't get as tired as you did the other day?

I know when I was working I found it hard juggling everything home, and work etc as I don't get any help from anyone so I can understand what is like trying to study and live alone etc.

It's no help I know but from talking on here I've discovered the problems you are dealing with are more comon than you think so just remember you are not alone.
And if you do feel that bad give yourself a day off and sleep the world won't end!! Could you not talk to your course tutor about the problems you are getting at the moment so they are aware and can maybe support you in some way?

Take care I'm happy to listen any time.

Helen

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Posted on 17 February 2006
#8

Yes , thanks Helen. I did look at the factsheet, must admit it was hard to take in and just left it. Many of the symptons i'm having at the moment i believed were temporary[everyone suffers] then reading them on the factsheet filled me with fear. .

I would like to learn more you only lately not sure what to say, you can ask me anything . In my heart know others are experiencing the same issues, only just wish the pain would go, It seems like saving myself from falling down a couple of steps did me no favours and maybe should have just fallen.

Am aware that my cp is forever and even though I feel down sometimes I learn to cope and get on with daily activities despite everything being difficult. What I can't contend with is being in pain adding to my tiredness, lately nothing is enjoyable. Feels like parts of my body are burning and have a great big sore inside. I'm
Sorry.

Take care

Amy

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Posted on 18 February 2006
#9

Hi Amy

I can't really follow how you've described the pain but I do know that when I'm in a lot of pain it makes me more tired everything is harder and I become really frustrated. Maybe you just need to give yourself some time out if that is possible and give your body a chance to catch up slightly on the energy levels.

Believe me your body will soon stop if you keep pushing too hard as I think you probably discovered the other day when you said all you could do was lie down. I suppose because when that happened to me I also didn't have the energy to stand either it was the scare I needed to male me stop giving myself such a hard time and to slow down a bit and rest occasionally.

I wonder from reading your posts who you are trying to prove a point too by pushing yourself to always keep going is it to yourself or to others? What other people think isn't important if they are really good friends they will understand when you are tired or can't do something.

Yesterday I went out with a friend shopping I took my wheelchair and said to him I'm tired and my knees hurt I don't want to walk today and because he understands it wasn't a problem he pushed me round as well so I didn't get more tired by wheeling the chair myself.

Maybe you need to sit friends down and really talk to them about what is happening. I did that a few years ago and got a surprising response. I'm not getting friends to do everything for me so I've still got my independence but if I ask a friend if they can get me some milk from the shops they know I'm not feeling that good and get it. They have actually said they like helping me when I need it as it doesn't make them feel so hopless by not knowing what to do to help.

Take care

Helen

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Posted on 19 February 2006
#10

Helen,

Like you many people say, I'm to hard on myself, suppose because I like to be independent have always been that way always seeming busy. I guess, am proving myself to others who in my life have put so many barriers up its unreal and to myself. Know it shouldn't matter but it does to me, do accept help from others, only need to try myself first.. Maybe its the way I was brought up. Over the years have learnt who my friends are, the ones who can joke around about difficulties i have in a way that is funny to me and yet understand the serious side of things too. have many friends,though would say only 3 understand more of my life and say they are learning more everytime we meet.

Sorry would like to say more, although getting frustrated as my arms are hurting.

Amy

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Posted on 19 February 2006
#11

Hi Amy

I understand where you are coming from I was exactly the same and still am to some extent but have had to learn not to be too hard on myself which is what I think maybe you need to try and do.

I don't have many friends as many of them disappeared the minute things started getting difficult for me with my cp and when I was no longer feeling up to arranging all the social activities for us all to do. I now only have one or two friends that are there for me and understand and who aren't embaressed to be seen out with me either with me walking or in my chair.

Other people always come up with excuses not to be seen out with me which has been hard to cope with over the years.

Learning not to be so hard on myself was the hardest thing to do and caused lots of tears and frustration on the way and I that still happens now at times.

I'm going into hospital in a couple of weeks and am getting myself worked up about how I will cope after surgery on top of all the cp stuff as I'm not going to be able to walk for about 2 months then they will operate on the other foot with another 2 months of not walking. So I do understand exactly where you are coming from.

Take care

Helen

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Posted on 20 February 2006
#12

[quote=panther,Feb 19 2006, 03:44 PM]
Hi Amy

I understand where you are coming from I was exactly the same and still am to some extent but have had to learn not to be too hard on myself which is what I think maybe you need to try and do.

I don't have many friends as many of them disappeared the minute things started getting difficult for me with my cp and when I was no longer feeling up to arranging all the social activities for us all to do. I now only have one or two friends that are there for me and understand and who aren't embaressed to be seen out with me either with me walking or in my chair.

Other people always come up with excuses not to be seen out with me which has been hard to cope with over the years.

Learning not to be so hard on myself was the hardest thing to do and caused lots of tears and frustration on the way and I that still happens now at times.

I'm going into hospital in a couple of weeks and am getting myself worked up about how I will cope after surgery on top of all the cp stuff as I'm not going to be able to walk for about 2 months then they will operate on the other foot with another 2 months of not walking. So I do understand exactly where you are coming from.

Take care

Helen
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Unforunately I learnt all about losing friends but it really affected me 3yrs ago before my trip to Canada alone for the first time, i'd said about being tired and living in halls doing every day tasks were difficult previously, so they disagreed with me going. At the time felt like I'd committed a crime being tired and therefore shouldn't consider taking an adventure, they kept putting obstacles in the way and always saying, 'you haven't considered this. . . that' discovered they didn't want to understand or be supportive, as if I wasn't capable of organising anything , seeing as i had difficulty just for instance, 'making a cup of tea'.

Its so unfair friends disappear when things with our cp get to much as it becomes clear that you were just being used , as they don't want to listen or even try to understand. I felt used after because they were quite willing to share their problems with me. We're the same person, cp ddoesn't need to come between friendship. . like you I have a fear of that happening, unless I have to I try not to use my cp as an excuse for anything, my really close friends just joke around with me, know when enough is enough.

Know its a few weeks away but best of luck with your surgery, am pretty lucky as only had to be in hospital a night as had a small investigation/op on my stomach. Should have come out the same day but was bleeding more than was normal. Even a week after was uncomfortable getting about, mainly laid down. Although itts not the same. I need a walker to walk, my parents are all for me walking on my own but i seem to panic to much. Use a wheelchair for long distances and getting to uni, although walking even with a walker is better as found people don't look down at you so much then . I do know how you feel, if I stop doing something for a while its tough having to relearn. Sure you'll be ok, keep your chin up.

Take care,

Amy

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Posted on 20 February 2006
#13

Hi Amy

I admire you for having the confidence to travel to Canada on your own I know it's something I would never do for some reason I've never really got very confidence about travelling alone and the small amount of confidence I did manage to get disappeared when I added a chair into the equation!! I think it is because my balance isn't very good so I worry about being in places on my own that I don't know.

I'm sure you are right everything will be fine after my surgery I think all the nerves are kicking in. You will soon know if I'm not coping as I will be posting here to help keep me sane!!

Have you thought of walking with your chair? I do that a lot as it means if I get tired I can sit down and wheel for a bit just an idea don't know if it will help you at all.

I guess there will always be people that can't see past our cp or people that think they are saying things for our own good when in actual fact they are holding us back.

Take care and try not to be too hard on yourself this week

Helen

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Posted on 22 February 2006
#14

Hi

What you have said you have gone through the pain lack of understanding etc sounds like a mirror image of what I went through a few years ago before I finally decided to start using a wheelchair - that was the hardest decision I have had to make.

My only bit of advice that I am able to give to you is that you must do what you feel is right for yourself given your current situation.

I could go on about the endendless hospital appoitments I have had where a doctor, pysio, OT had said to me we cant change the way thing are but don't stop what you are doing ie walking working .

Eventully something had to give it was either work full time and at the end of the day end up knackered my onl;y option at the time was to start using a wheelchair some of the time - tyhis was a decision that took me months to finally come to even then I thought I would only use it when I really needed to.

Since I started using the wheelchair initially only occasionaly it gave me so much more energy i was not wanting to fall into bed as soon as I got home.

The positive side of this for me has been that althrough I now use the chair permantly I now have so much energy and get up and go that quite frankly peopple cant keep up with me however that has come at a price three years ago I could walk now I use the wheelchair permantly.

Personally this is a consequence I am more than happy for me to accept however hard it was originally to think about

if you would like to chat with me about your situation I will more than happy listen never know it may do us both good.

Take Care

Dean Cutler

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Posted on 22 February 2006
#15

Hi Dean

You are right I guess what I have gone through is nearly a mirror image of what you have gone through like you I've done the round of hospital appointments etc and got all the t-shirts to prove it!!

Unlike you I've had my chair 5 years and I guess I don't use it as much as I should. I suppose there are a number of reasons at present my house isn't very wheelchair friendly am in the process of applying for a disabled facilities grant for adaptions maybe I'll use it more then.

Also as things started to get harder to do and my health got worse so called friends disappeared saying that they couldn't cope I now only have two friends that don't have a problem with being out wuth me in the chair. As they run a holiday company for people with disabilities if they are away I don't see people.

Where I live is still very stuck in it's ways and I'm regularly refered to as the little cripple girl that lives in the bungalow! At 32 that's hard to take at times.
My family also haven't understood why I got my chair and see it as me giving up and I guess that is another reason why I'm still trying to keep walking.

Because everyone knows me as being really bubbly and smilely no one really sees the bad days where there are a lot of tears and I wonder if all the effort I'm putting in is worth it.
In 2005 I stopped work because of feeling exactly as you described falling in to bed as soon as I walked in the door. Although this has helped in some ways the improvement has been so slight it's not really that noticeable.

I guess at the moment everything is harder as I'm having surgery in a few weeks and I'm scared of what the outcome will be cp wise and the problem is no one can answer my fears as they don't know. And also everyone keeps saying to me you will be fine because you always do cope. I guess I've just got to good at hiding it.

Thanks for your reply look forwrd to chatting some more
Take care

Helen

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Posted on 22 February 2006
#16

Sounds as though people's attitudes are the same towards us - if we're smiling we must be happy. Only if they knew, there are periods when alone like you I am tearful and it can be over the most tiniest of things. Feel, 'is all this worth it? as some days can't deal with my pain. Its so hard and sure it is for you, in your head want to do everything and your body won't let you. My parents can say I'm giving up if I stop doing something, they always have even though there are certain things in my life now I see their reasons. Love them dearly but they don't always understand.

Am staying home today as can't face uni, hurting so much feel like crying expect got my brother staying and am not explaining. he's likely to say why don't you stay at my parents for a bit.

take care

Amy

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Posted on 22 February 2006
#17

Hi Amy

Know exactly what you mean about family none of my family live locally to me and my parents moved abroad a few years ago so none of them have really seen how things have changed for me.

I'm having an easy day today as well as I feel really tired and I know the next couple of days are busy. I'm trying not to think of my hospital appointment on friday but also know I need to write down any questions I want answers to. But I also know that most of the questions that worry me the most the consultant can't answer as they don't know how having this surgery will affect me or how long it will take me to walk again after wards etc.

Have a good day and take care

Helen

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Posted on 22 February 2006
#18

Thank you, Helen. Took a lot for me to go to Canada, despite making all the organising I did alone, was unaware what to expect when I arrived, people put me off. Didn't know anyone, miles from home, a relative who lives there thought I was selfish for considering it and unaware of the responsibility I put on people. Hence, didn't see them.

Up until the 2nd day of being there thought, 'this was a big mistake.' Stayed at a B+B, soon between friendly with the owners, they took me to many tourists places with their friends, loved it. The man has Parkinsons and discovered his wife used to work with cp kids so me going there wasn't 'out of the ordinary'. Despite the reactions here, was welcome into a family who had some understanding, wanted to know more. I learnt a lot too. We've become extremely close, been back several times, visiting as a friend.

Can I ask you, would you ever consider/like going abroad? Was rather anxious, as well, about managing at the airport and on the flight, but there's no problem there the staff are extremely helpful. Take you through customs in like a golf buggy, to departures, on to plane, at the destination they meet you and assist right up until someone meets you.

Thanks for the advice about walking with my wheelchair, use an electic wheelchair to go anyway. Have a manual one which I can walk with when someone's with me, but can't wheel myself, end up going in circles as don't have the same amount of strength in both my arms.

How long have you lived alone??

Amy xx

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Posted on 22 February 2006
#19

Hi Amy

Sounds like you had a really good holiday. Maybe one day I will travel on my own but really good friends of mine have set up a company that does holidays for disabled people they will do as much or as little as you want them to do. I have posted about them in this forum topic is titled holidays. So I think until I have built my confidence up will travel with them for a bit first, but maybe one day....

I suppose I'm lucky my arms aren't affected by my cp but I have noticed since I've been using my chair my wrists are getting weaker and there are some things I now find difficult to do.

I've lived on my own for 9 years now and I actually moved away from family to be able to do it as otherwise I don't think I would of done it as they would of tried to stop me, and although there are times when I get fed up being on my own I don't think I'd change it. I just start having conversations with one of my cats when I want someone to talk to!!

A lot of people are surprised when they hear I live alone away from family and with no support from carers etc it's been hard at times but you soon get used to it.

Helen xx

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Posted on 23 February 2006
#20

[Hi Helen.

Good luck at the hospital tomorrow, will be thinking of you, how are things? Am not doing so good today. Reading your posts you're similar to me in how you see life, about your parents, people surprised that you with alone. I just don't understand, why a surprise, its hard but you get used to it. My parents live 45mins away, they don't know all i get up to and sometimes can't believe how independent I am. When I go to visit its so hard as can feel dependent on them..

Take care

Amy x

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Posted on 23 February 2006
#21

Hi Amy

Thanks for the support I'm trying not to think about it too much as the nerves are kicking in and it's made harder by people saying you can change your mind if you want but I don't really have a choice as they have already told me that if I don't have this surgery done I will end up in the chair full time eventually.

It will be an early night tonight I think as have to be up early but I will let you know how it goes tomorrow.

Like you say it shouldn't be a surprise that we live alone and sometimes it's a good thing our parents don't know all we get up to!!

Take care and thank you

love Helen xx

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Posted on 27 February 2006
#22

Helen,

Hope all went ok on Friday

take care

Amy x

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Posted on 28 February 2006
#23

Hi Amy

Sorry I meant to post before now about how things went at the hospital. They went ok I suppose even though I spent most of the time there in tears as they explained what the surgery is going to involve and also how long I will be in hospital.

I've already had the date for surgery moved twice it's now not going to be until April as the consultant is going on holiday!!

I think I'm still a bit shell shocked by it all. Hope all is well with you and things have improved a bit from what they were last week.

Take care
love
Helen x

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Posted on 2 March 2006
#24

Hi Helen,

It just doesn't seem right when appointments/surgery are postponed several times, even worse when the reason given is the consultant's on holiday. We have to wait long enough to be seen as it is. I'm sorry.

This week seems to be going the same for me as last week, trying to get down to my study and struggling to concentrate for even half an hour so am getting frustrated. Bad enough not seeing an end to the PhD without facing a mountain of reading, not really getting through it to understand in order to relate to my work. Focusing on anything lately is nearing impossible. So restless yet am feeling really tired, doesn't make sense

I've a hospital appointment tomorrow with the gynaecology department, bit anxious as should be going for a checkup and report on improvements from the small op/investigation i had in November, they hasn't been any!!!!!! In fact, maybe in a worse position.

Take care

Amy xxx

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Posted on 2 March 2006
#25

Hi Amy

Hope all goes well tomorrow. I know what you mean about feeling really tired I was out with a friend yesterday shopping, but because I'd had a really bad night the night before I couldn't really enjoy it as was so tired.

I guess all you can do is do as much as you can, but not push yourself too much with all your reading and work otherwise you will just end up stressed out and even more tired. I know it is a vicious circle alot of the time when it comes to juggling your cp with all the other things you want to do in life.

Take care

Helen xx

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Posted on 8 March 2006
#26

Hi Helen,

How are you? I'm so, so, went to my parents for the weekend after my hospital appointment which was nice. As always the doctor said I just have to be patient and will slowly see improvement. Was rather angry as mentioned another problem bothering me and because I haven't a water infection he seemed to dismiss it saying it's me imaging things. I'm finding the need to use the bathroom more and more[some days worse than others], can begin to wet myself, and occassionly think I smell down below. Wondered if you have experienced anything like this, recently embarrassed, scared and feel awkward to go out with people because of it.

How are you feeling?

Take care

Amy xx

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Posted on 8 March 2006
#27

Hi Amy

Have you tried talking to your gp about this? I haven't had that kind of problem so probably won't be much help I'm afraid.

I'm ok very tired and my knees are hurting a lot these last few days, hopefully it will improve eventually after the surgery.

Take care

Helen x

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Posted on 8 March 2006
#28

Hi Amy

Sorry to intrude on your conversation with Helen. I just wanted to suggest that you make an appointment with your GP and have a urine test done. If there is no sign of an infection then you can ask to be referred to a continence nurse, your GP should be able to do this for you.

Kind regards

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Posted on 8 March 2006
#29

Thank you, they did a urine test at the hospital and it was clear - no sign of infection. Do you know how long a wait to see a continence nurse, what will they do?

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Posted on 8 March 2006
#30

Hi Amy.

How long you will have to wait to see a continence nurse can depend on your health authority and what is available in your area. Some GP practices have their own continence nurse, or you may need to be referred to the local hospital. Your GP should be able to advise you on this.

The important thing to remember is that this is a problem for you, and should be investigated because of that. If your urine tests are negative then your GP may want you to have further tests to see if there is anything else that could be causing your symptoms. A good thing to do would be to keep a toilet diary (bizarre thought I know!) and make a note each day of how often you have to go to the toilet and any times when you might not make it in time.

You may want to have a look at the NHS Direct website (www.nhsdirect.nhs.uk) for more information about any likely tests. Or Incontact produce a very helpful booklet called "a healthy Bladder - and what to do if things go wrong" available to download from http://www.incontact.org/publications/booklets/healthybladder.pdf

Hope that helps.

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