what can I say?

Everyday living
22

Hi Poll,

You have touched many people who visit this site, me included, advised, supported or even just commented.

Different people want and get different things from this site, whether on it daily, weekly or less frequently or just adhoc as needed, posting and or just “looking”.

People here have MS, care for someone with MS, know someone with MS, undiagnosed or affected by some similar autoimmune/neuro condition. You dont need to have some MS badge to be useful and beneficial here…as you have proven!

Anyway, bottom line is that your folks seem worried about you, concerned cause they love you and seem to be seeing this site and a negative, I have never had the impression from your posts that you see it as that for you and your health, you are a grown, sensible woman and very much part of this community and you would not stay here if it was wrong for you I’m sure!

Let them see some of these replies…20 in 20 hours!!..what does that say???

Jools

X

23

Hi Poll

I am going to say my piece now.

I think of you and a lot of others on this site as my friends. Your words have helped me through some rubbish times and if you and my other maties can make me smile when I feel like crying then that has got to be a good thing.

We need people like you to help us through the day. I for one look forward to coming on here and reading your positive, jolly posts.

As you know I retired through ill health last year at the age of 51 and I felt like rubbish at retiring so young. You and others on here have been a lifeline to me. Not being at work, without this site I would be sat watching rubbish tv all day.

Our lives would be miserable without people like you who lift us all up and thank you for that Poll.

It doesn’t bother me that you don’t have MS. You are suffering as much as we are with very similar sumptoms and if you get some light relief from chatting on this site then what chuffin harm is there in that?

Thanks Poll.

Shazzie xx

24

Well, I am overwhelmed by all your wonderful replies! Thankyou from the bottom of my bottom!!!

Who wouldn`t be, eh?

As I have said many times, if any of my experiences can help others, when they find themselves at a crossroads with eg shall I keep trying to walk, when the daily falls are harming my body, or should I give some thought to having a wheelie?

or;

My neuro makes me think my problems are all in my head…ask about tests, a second opinion, speak to your MS nurse…hang on in there, dont allow these bods to make you think you`re imagining or making your symptoms up.

Ive seen 16...yes, 16 neuros in as many years. Ive been pushed from pillar to post, had my world turned upside down and inside out, with the mis-diagnosis, change of diagnosis from MS to HSP, and back again.

A tip someone once gave me was…never cry in front of your neuro, hell put you down as neurotic and write you off`…I think that is a good bit of advice. I do realise it is a very hard thing to ask, but try to remember that, if you can.

As regards my familys and carers concerns for me, I do know they are only saying these things because they love and care for me, but they dont understand my thinking (hubby says no-one will ever be able to do that…but hes just a closed minded person, so Ill do what I want and he knows it…eee, that`s a bloody minded thing to say, eh?)

Dont worry guys, I certainly wont be leaving this site. I am Boudica…a warrior…a feisty, redhead. The only difference twixt me and her is that she was from East Anglia and I am a Yorkshire lass…both forces to be reckoned with!

Just realised, I havent used my favourite word in all this, so here goes;

My favourite saying is this;

I may be broken, but Im still chuffin ere!`

Luv and much chuffiness,

Pollyxxxxxxxxxxxx

25

Hi, There is a line of thought that says that, if you’re trying to get well then you should surround yourself with well or like-minded people. Therefore, if you come onto here a lot, you’re surrounding yourself with sick people and are constantly reminding yourself that you’re sick. I’ve just read Breaking the Habit of Being Yourself by Dr Joe Dispenza. He puts a strong case forward for imagining yourself well, and what that would feel like, as a way of re-programming your mind and body to be well again. A lot of how we behave and react to things is grounded in what we picked up from what was going on around us before we were 6. I’d miss you if you weren’t around though, Poll. Do what feels right to you. It’s very easy for others to have opinions when they’re not the ones it effects. Heather PS. I’m currently reading Sweet Deception by Dr Joseph Mercola. Check the labels of what you’re eating or drinking, and if it contains an artificial sweetener, STOP NOW AND THROW IT AWAY! All these chemicals probably played a part in us getting ill in the first place.

26

Hi Heather.

Thankyou for your reply.

I cant really see how thinking yourself well will make a difference.

As I am usually a positive and bubbly person, my mind does act like that

BUT

I can be in a good upbeat mood, when I decide to do something, when my stupid body refuses to play along. It lets me know my limitations. Then I can be brought down and back to reality.

When I read I have MS. It doesnt have me`…I think, no love, it does have you…

BUT

if someone is thinking in a positive way, who am I to burst their bubble? I wouldn`t dream of it.

Cheers, Pollyxxx

27

We need you Speaking as a un diagnosed newbie your words just help when were down or worried and don’t know what to expect, your like a second mum so you gotta stay Luv Gray xxx

28

I can’t add much to the wonderful words written previously, but you are a ray of light on the limboland forum and I hope your hubby knows this. It doesn’t appear to me to that you let the forum depress you, but only you can know that for sure. You have said you are not leaving, and I am pleased to hear it :slight_smile:

29

Hi Gray and Puddinglover (I am one of those too!)

Thanks for your replies. Yeh, I am motherly, `cos I want to look after everyone. I am also an organiser, like when I was working…but my authority doesnt work anymore!

Cheers guys, luv Pollyxx

30

All these lovely replies to Poll - has really shown all of us the wonderful person she is. l have been on this forum for a long time - and l am one of the eldest - having had ms for 31yrs. After reading the replies - l realise that l have not spent much time helping people on the ‘newbie’ and limboland forums. l do just stick to the Everyday Living - Someone wrote that Poll should write a book on all of her experiences. Well she could fill a few chapters with all these replies. Anyone good at cartoon drawing - Boudica - she would make a superhero. l am thinking of all the ‘franchising’.

31

Poll, I can only echo what everyone else has been saying. You are wonderful and would be sorely missed as would all your very practical but amusing advice. It looks like I’m looking at a diagnosis of FND but I will still talk to people on here. Purely because everyone knows exactly how all the symptoms feel. I can still talk to all my close friends but they don’t completely understand and only have a limited tolerance to all my ailments. Here you aren’t judged and don’t feel so alone, regardless of your diagnosis. Keep up the good work and set Boudica’s chariot rolling on to the next set of people needing a very wise womans advice.

Sharon xx

32

Poll you just need to look at all of the amazing replies you have received to confirm that you cannot leave us! Nothing more to be said… Linda x

33

Hi Poll, I have never really used forums until I had my dx, I had searched around the internet for ideas about what might me going on. But after dx I decided to start using this board. Posts you had written and the other really friendly people on here gave me the strength to start to come to terms with my MS. This is the only place I feel I can post something that is bothering me that I won’t be judged on what I’m saying. Poll on many a dark day you have given me a smile with your tales and provided me with inspirations to adapt to what this disease has sent me. I have always taken from your tales that I know you don’t have MS but you experience many similar symptoms. You are a positive person, I had noticed your posts didn’t contain so much humour as they had previously but I have been so happy to see your humour returning in your more recent posts, I was worried about you. So maybe your hubby saw this in a different way and wondered if the forum wasn’t helping you. I’m glad your not going anywhere. Take care and thanks for all the support you have given me through your posts. Barney

34

It sounds like they were just worried for you Poll, especially if you’ve been feeling down lately. The important thing is how YOU feel about being on here. No, you don’t have MS, but does it really matter? You give so much to these forums, they would be much dimished were you to leave. I still belong to a few ME forums, and if I can help even one person with some advice and support, then I’m more than happy to do so (and they haven’t thrown me out yet, lol). Sometimes it is good to have a break, especially if we’re feeling a bit overwhelmed, but you can see how much support you have on here, so I’m going to have to join the others and say please don’t go.

Mags :wink: xx

35

Hello Poll,

It will be a sad day if you ever leave us. You have done so much for so many on this site. Although you might not have MS you are knowlegable about it. It’s a strange idea for your carers to think that it could depres you. Please stay with us for years and years and years and years and years…

Moira

36

Hi Polly - you need to do what’s best for YOU. Talk it through with hubby and carers and try to understand where they are coming from, but at the end of the day it has to be YOUR decision. If you do decide to go you’ll be missed by many as all the posts you’ve received testify. Really, really hope you don’t go but your wellbeing is most important of all.

H x

37

I think this thread should be your answer Polly

You have affected more lives on this forum than a lot of people do in their ‘normal’ existance and it must give you a great deal of pleasure & satisfaction to know that you can still reach out and help people who need it - even though your physical world may be more limited that it used to be.

Take care hun

JBK xx

38

eeee I seh! Even more kind replies. You are a lovely lot indeed!

I think I can tell you what this has all been about.

I had the spc op in July (the 4th…Independence Day…that meant more independence for me too) During the night of the op, in hospital, I had to call a nurse, due to a lot of discomfort in my tum…about 4 ins to the right of the op site. I was told it was just post-op tenderness and would go away.

Well It didnt go away! The actual draining worked fantastically…lots of straw coloured wee…plenty of it, but I have always drunk lots of water.

At 6 weeks post op, a district nurse changed the catheter for me, as the pain was chronic.

But the pain wouldnt go. When I went out in the van, the pain was quite unbearable at times. I took paracetomol every 4 hours, but it didnt touch it!

Then at week 9, my carers and me went on hols to Filey, for a week. We went out most days and I always came back in a lot of pain in my wound and tum. When I got home, I got the district nurses out and they said my wound was ulcerated. That was caused by the tube rubbing against the wound. It took a while to go, but did. But the side pain continued. I spoke to my GP and she sent another doc to see me at home. He examined me but didnt know what was what! He prescribed co-codamol and advised me to try to get my November follow up appt with the urologist brought forward.

Well I took the co-codamol and boy! was I poorly! I had 4 seriously awful dizzy dos and knew it was the tablets, so stopped them and told my GP. She advised me re the uro appt too. So hubby and family were really worried and said they wanted me to have the spc out! I thought about it too, but then realised that as I had lost my standing strength, with not needing to use the loo for wees, I would be left using pads and wetting myself all the time. Family and carers were disgruntled with the fact that I had learned about spc through this site.

Anyway, I rang the uro`s sec who said my GP should write a letter. All that was done and yesterday I got a new appt…23rd Oct.

BUT I`ve been on a new med (to me) pregabalin for heel pain… It has taken the tum pain away…totally! The heel pain is reduced, but not gone fully.

So, my carers and hubby know about me finding out about pregabalin from the site and when I said I think it could do with a slight increase, they all had bad feelings for me. I said it is a low dose that im on........75mg........and that Id read about much higher doses being prescribed. Well they said `Look, those higher doses are given to people with MS. YOU havent got MS!)

So do you see where they are coming from now?

I do, but have decided not to tell them as much as I have been doing.

To reiterate my previous words, I AM NOT LEAVING THIS SITE!!! I have too many good friends here and it is a social outlet for me too, as we dont just talk about illness, do we?

My hubby isnt a talker, hell make me a beautiful meal, build me a deck, but he just cannot sit down beside me and say How are you today love?` When I am talking to him, he walks away.

if I didnt have my morning carer every day, I would hardly speak to anyone. That`s one of the reasons I love this site.

luv Pollx

39

Hi Poll

Only just seen this and can appreciate their concerns cos you really have had a terrible time of it, but it is obvious this site gives you a real purpose, and that has to count for a lot.

I am sure no medic would give you anything that you didnt need, so that should help to ease their worries. I also think it is very difficult for our loved ones to feel so helpless when we are struggling, it is a real catch 22.

You give soo much advice, are so caring to a lot of folk, that hopefully they will come to see this as a good thing.

Take care ((((((hugs))))

Pam x

40

Dear Boudica, please please stay. So many times when things are tough I think “What would Polly say or do” and I know that I am not alone in thinking it. I see you as mentor to many. Often well meaning friends and family don’t quite get it but on here I can rely on your stories to bring a smile as well as practical help and advice and if you don’t immediately have the answer you will find someone who does. I hope I am not being selfish in saying we need you.

41

Dearest Poll, what a crappy time you’ve had and yet you are still such an encouraging, wise woman and as many others have said you have helped so many of us. Glad you are staying - the wonderful thing about here is that when someone says they are struggling so many of us know what that really means and you can never be lonely even if you are housebound or struggling cause there’s always someone around for a chat. I also have a hubby who is great at doing but not so great at talking and I know struggles to see me struggling as I’m sure yours does too, so I’m so grateful for you and my other “virtual friends” who always understand. Thanks lovely lady xxx