I'M FINE!: Ok, we have all said it. Being... - PSP Association

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I'M FINE!

Heady
Heady
89 Replies

Ok, we have all said it. Being fantastic actors that we are, even meant it, well sort of. You know the scenario, " how are you Heady? I'm fine", said she, lying through her teeth, knowing full well nobody really wants the correct answer, "actually life is really s--t."

Well, after a lovely lunch again with the "family" I have decided you all need to know what "fine" means.

F**KED! INSECURE! NEUROTIC! EMOTIONAL!

Now you can look anyone in the eye and tell the complete truth.

I AM FINE!!!

I thank a lovely man who I saw when on a Low Mood course, this changed my life, I haven't told a "lie" since. I have a private giggle every time I use it.

Again, Amanda, thanks for organising today's lunch. It was lovely it see everyone. PSP may have taken the most precious people from us, but we have survived. As, hopefully Amanda will tell you all.......

Sending big hug to those I couldn't hug today.

Lots of love

Anne

89 Replies
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Tippyleaf

It was so lovely to see everyone today - huge thank you to Amanda for organising.

I absolutely love the meaning of FINE and I will be able to look people in the eye ( possibly watery) and say I am fine!!! Thank you so much Anne

The shared understanding, love and laughter at our gatherings are just wonderful cannot tell you all how much I appreciate the support.

Sorry to rush off my drive to Gloucestershire was a sunny one!!

Love Tippy

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Heady
Heady
in reply to Tippyleaf

Glad you got there safely. Hope all goes well today.

I think the best bit yesterday, was seeing you being cuddled, when you needed it, by Yvonne. We have all wanted to do that, when one of us is in trouble, yesterday it actually happened. I am not reglious, so forgive me, but Thank you God for this site.

Lots of love

Anne

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Yvonneandgeorge

Oh Anne so true, it was lovely meeting up today, with my favourite people, it feels so good when we all get together, to be able to talk to people, who understand how we are really feeling, and be able to cuddle those people, that have kept you sane, helped so much through this horrible journey of PSP, we hate you PSP, you have taken so much from us all.

We have come out the other side, so hard at times, going on holiday, but wishing that, that special person was with us, then coming home and the house is empty, that’s when the sadness hit you, and how it hits you, for weeks after.

Also thinking about you all that are still going through this journey, knowing how you are feeling, but just being there to hear how hard you are finding it, it brings back the times when we were so tired, looking after our loved ones, fighting to get them the care they so deserve. I remember feeling so tired and guilty getting upset with George, because of being so tired, I remember when I was crying one time and George was laughing, I said it’s not funny, he said I am crying inside. Oh I would love to have George back, but without PSP, I am happy he is not suffering anymore.

I thank PSP for the wonderful friends I have meet, would not of been able to cope without you lovely people. ❤️❤️❤️❤️❤️

Yvonne xxxxx

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Heady

Couldn't agree more Yvonne. Lovely to see you looking so well.

Lots of love

Anne

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doglington

Yes. What a lovely day. Still feeling very full - and a little inebriated !!

I'm FINE Anne !! Love it.

I love the honesty and openness about feelings. We are all survivors but that doesn't mean the journeys over - as proved by the response to Amanda's poem.

Thanks again Amanda.

Here's to the next time !!!

Love Jean xx

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Heady
Heady
in reply to doglington

Yesterday was about surviving, wasn't it. Look forward to our next get together.

Lots of love

Anne

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HilsandR
HilsandR
in reply to doglington

So right Jean, the journey is a flipping long one. I rarely say FINE. I prefer OK. OPTIMISTIC that the raw grief will lessen in time, KEEN to get on with my life and enjoy what I have, as Rod would have wanted. It's not easy but PSP took a huge part of me when Rod died, it's not gonna take the rest of me, so my adaption of OK is for me a positive little word that reminds me of where I need to get to. I'm off on a JustYou walking holiday in Tucany 1st October - filling my TenaLadies at the thought of it but I know Rod would be so happy that I'm getting on with life even though it's sometimes requires giant steps.

Love Hils

x

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doglington
doglington
in reply to HilsandR

Oh well done ! That's very brave. Have a good time and let us know how you get on . Do you know others in the group ?

Love Jean xx

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HilsandR
HilsandR
in reply to doglington

I'm not feeling very brave, Jean, but know I need to lift the barriers and get out of my comfort zone. Tuscany is beautiful and I love walking so I know I will enjoy that side of things. There's 30 in a group of all women (my worst nightmare - lol) and just one man so that'll be entertaining I suspect. I do have a friend booked on the trip but it's touch and go whether she will make it due to ongoing health issues. I am sure it will be a great boost for me doing it and if it's not for me then at least I will have tried. Love Hils. x

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Heady
Heady
in reply to HilsandR

Hey Hils, that's brilliant. I have travelled with them twice. Don't be scared, everyone will be in the same boat as you. Both times, the people on the trip were great fun to be with and the organisation was second to none. Very full on, hardly anytime to catch breath, never any time on your own, unless you want to be. Enjoy it!

Lots of love

Anne

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HilsandR
HilsandR
in reply to Heady

In my heart, Anne, I know I will be fine as I talk to anyone and everyone. It'll be the first time abroad without Rod and I know that's going to be heart wrenching but I can't keep looking back, I must look forward. It's giving the kids peace as well knowing that I'm getting on with my life and things will be ok. My daughter always says to me that she has to make an appointment to see me these days - lol. Just trying to fulfil my promise to Rod that I will be ok. When I think of him I visualise his smile and can hear him saying, "you're doing ok" and that keeps me moving forwards.

Love Hils

X

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Heady
Heady
in reply to HilsandR

I went on a walking weekend and suddenly I heard Steve say “at long last, you are doing something sensible!” Made me cry, it was the first time I had felt him with me, about 9 months after he died. Now and again, he will say something, sometimes I do it, others, well let’s say, I answer as his wife!!! Just walk into that airport with your head held high and have a brilliant time.

Lots of love

Anne

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HilsandR
HilsandR
in reply to Heady

I will report back on my adventure, Anne, but if the going gets rough then I do have a safety net, "una bottiglia di vino rosso per favore." Pretty sure that's all the Italian I will need to get me by - lol.

Love Hils

X

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Heady
Heady
in reply to HilsandR

Don’t worry, there will be drinking group, even if you have to start it!!!

Lots of love

Anne

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HilsandR
HilsandR
in reply to Heady

Sounds like a plan, Anne.

xx

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Nanny857
Nanny857
in reply to HilsandR

Hi Hils, that is wonderful and a brave thing to do. I hope you have a great experience and enjoyable holiday. Rod will be with you every step of the way and proud of you.

Lots of love

Nanny857xx

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HilsandR
HilsandR
in reply to Nanny857

Thanks so much Nanny857, so kind of you to post your good wishes. I suspect the trip will be bitter-sweet as the person I most want with me won't be there. However, life won't be waiting for me to get my act together so I've got to push out of my comfort zone. In my head I can hear Rod saying "well done love". That sets the tears off but makes me smile as well, if you can make sense of that. Hope life is going as well as is possible for you.

Love Hils

X

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Nanny857
Nanny857
in reply to HilsandR

Having my first taste of respite and it is good. W settled in at the Care Home although he asked me today if he was coming home with me. However when I said he would be home on Friday he was ok. So I have another few days of just being me. xx

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HilsandR
HilsandR
in reply to Nanny857

The break will do you the world of good and knowing that W is in safe hands lets you get on with some 'you' time without worrying too much. xx

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doglington
doglington
in reply to Nanny857

I know Chris just needed assurance that he was coming home again.

Enjoy the peace.

Love Jean xx

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HilsandR
HilsandR
in reply to doglington

Hope you had a lovely time meeting your new little man yesterday, Jean. Smiles all round I am sure.

Love Hils

X

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doglington
doglington
in reply to HilsandR

Yes but unfortunately he has an infection. They have done a lumbar puncture to test for meningitis. Poor little thing. They are in a private room at the hospital who are brilliant but its an anxious time. I will post a picture when it is all settled. I am holding back panic ! You know the feeling.

Love Jean xx

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HilsandR
HilsandR
in reply to doglington

Oh what a worry but sounds like the doctors are addressing it with speed so that's a comfort, though I know how hard it is to put the lid on the panic. It never ceases to amaze me how tough these newborns actually are - I am sure all will be well and then you can start to really enjoy him.

Best wishes, Jean.

Love Hils

x

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doglington
doglington
in reply to HilsandR

Yes. I know that's true but it has tipped me back into the familiar position with Chris of hoping for best and fearing the worst.

X

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HilsandR
HilsandR
in reply to doglington

I know Jean, it's so hard to stay positive sometimes. Look forward to hearing that things are ok with the little chap.

Love Hils

x

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Nanny857
Nanny857
in reply to doglington

Called with W today and he asked if I was taking him home. Told him the decorator was coming to paint his room on Thurs and I would bring him home on Friday. You were right Jean, he just needed reassurance, as he didn't hold on to me today. So making the most of the next 2 days, nothing too strenuous. xx

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AnneandChris

Hi there

Glad to hear you're having a good week, hopefully with lots of R&R.

I must admit it's very quiet here, I didn't go in to see Chris on Saturday or today but will see him tomorrow afternoon. He looked very frail when I went in on Sunday morning, perhaps it's seeing him other than in his own chair, room etc. etc.

Oh how I hate this disease, it is so cruel, so desperately sad robbing our loved ones of what they were and what they had.

Sorry, didn't mean to have a rant.

Hugs Anne xx

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Nanny857

I find the evenings quiet even though W would have been in bed at 7.30pm. W went in to the Home on Wednesday and I didn't see him until yesterday, Sunday. I got a shock as he too looked a lot more frail and older. I think caring for them everyday you don't notice the changes as much. Didn't call today but going in tomorrow.

PSP has a lot to answer for, as you said, robbing our loved ones from the strong, loving person they used to be. It's the pits.

Hope you are getting lots of R&R and you don't have to apologise you have every right to rant.

Lots of love

Nanny857xx

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doglington
doglington
in reply to Nanny857

That's so true. I now look at old photos of Chris and can't believe how frail and vulnerable he looks.

When I went to visit him in hospital I had a moment of panic as all the old men looked the same and I feared I wouldn't recognise my husband !!

I did fortunately.

Love Jean xx

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MaddyS
MaddyS
in reply to HilsandR

Hi Hils

You will come back having had the time of your live. I have just returned from my first 'solo' holiday in the USA. FANTASTIC. You will see yourself in a new light thoroughly appreciating the new chapter in your life. ENJOY. Lots of love Maddy xx

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HilsandR
HilsandR
in reply to MaddyS

Hello Maddy, so nice of you to send such an encouraging post - thank you. I know I have to get on with my life without 'the love of my life' so just got to take the plunge. So pleased that you enjoyed the USA with other solos - I guess it paves the way for more adventures for you. Which company did you travel with and where did you go - from your post I have no doubt you would recommend. Life goes on, doesn't it?

Love Hils

X

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MaddyS
MaddyS
in reply to HilsandR

Hi Hils

I went with Riviera they do all types of holidays, including solos. There are many such companies, just google solo. I went for two weeks to the southern states. The trip was very well organised and I can say enjoyed by all. I have made a new friend and hopefully we stay in touch in the future. Just give it a go and you will surprise yourself. I also find that as time passes, time spent with PSP moves into the background, I now just remember the happy times. I wish you all the very best for the future. Love Maddy xx

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HilsandR
HilsandR
in reply to MaddyS

I have a friend who I am sure has used Riviera - I'm seeing her tomorrow so will ask her. You're are so right, we have to let the past go otherwise how will be move forward. It'll be just a year on 10th October since my husband lost the battle with PSP, so early days for me in the grieving process but I'm giving it my best shot to start to live again. Thanks so much for your best wishes.

Love Hils

x

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MaddyS
MaddyS
in reply to HilsandR

Hi Hils

Take one day at the time, you decide what's right/comfortable for you. A holiday, even a long weekend away is a good start to get you on the way to 'recovery'. All the best, love Maddy x

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journeyofjoy

Fine. There's that "F" word again.

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Heady
Heady
in reply to journeyofjoy

It the only word that suits, isn't it???

Lots of love

Anne

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Auddonz

So true Anne :( Wish I could have seen you all Audrey

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Heady
Heady
in reply to Auddonz

Wish you could have been there as well Audrey. How are you doing?

Lots of love

Anne

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Nanny857

Love it Heady and oh so true. Glad you all had a lovely day together, just sorry I couldn't be there.

W is going into care home for respite tomorrow for 9 days - it's our first time, and he is very anxious about it , even though the Home Manager came out to visit him yesterday and tried to reassure him he would be well looked after. Me, I'm (I was going to type Fine about it) but I am really looking forward to just being me and not 'the carer'. Apologies if that sounds selfish.

Lots of love, Marion xx

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SewBears
SewBears
in reply to Nanny857

Not selfish, wonderful. Good for you! ❤️

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AnneandChris

Marion, I'm exactly the same, see my reply further down.

Anne

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Heady
Heady
in reply to Nanny857

Be as selfish as you possible can be. This respite IS for you. To sleep, recharge every single battery, have some much needed fun. Please don't waste any time worrying about W. He will be OK, after all, there be will plenty of carers, who are not tired, double handed and can go home to get away from it all, looking after him. What part of that can you ever acheive???? I know they get paid for this, you do it for love, which is a much higher currency, but even love needs to be replenished occassionally. A few days away will work wonders. If you visit, do NOT do any caring, just be his wife for a few precious hours.

Sending big hug and much love

Lots of love

Anne

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AnneandChris
AnneandChris
in reply to Heady

Anne, thank you so much.

Message received and understood.

Had planned to do quite a few things but diary now cleared for lots of high-quality R&R as I admit to being very tired.

What a wonderful group you all are.

Hugs xc

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Nanny857

Hi Anne hope you are enjoying your respite and getting plenty of well earned sleep. First day I got a builder to check over our roof for any work that needed done , 1 cracked tile and some loose ridge tiles all now fixed for winter. Then came to caravan with my sister and our daughters. We've walked the Mournes mountains that sweep down to the sea in glorious sunshine, bbq, put music on in the evenings, danced, laughed and chatted until late. Heading home today and visiting W. (Heady, I won't do any caring, promise). Then I will rest in between visiting him before he comes home on Friday.

Lots of love, Nanny857xx

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AnneandChris

I went to Somerset yesterday to see my sister and brother-in-law for the day in Glorious sunshine. Out for lunch today, Tuesday and Wednesday, painting tomorrow (artist type) and off to see Downton on Thursday. So all in all a nice week ahead with good friends for company.

Enjoy the rest of your week.

Hugs xx

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Nanny857

I have Exercise class tomorrow morning, spa Tues morning, dancercise class in the evening. Nothing planned for Wed and meeting friend for dinner Thurs night.

Enjoy your week, sounds lovely.

xx

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SewBears

I thought of you all today when I was at the dentist with hubby. I will join you... hoping for 3+ years from now when I will need you the most! ❤️

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SewBears
SewBears
in reply to SewBears

Oh, and I’m FINE 😂😂😂

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Heady
Heady
in reply to SewBears

Would love to meet you.

Lots of love

Anne

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Karynleitner

Love your post Heady. So true.

I wish I was closer and able to meet all of you.

Thanks for the caring and kind thoughts. 👍🏽💙

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LuisRodicioRodicio

Hi Anne!

My answer is usually:

"Well ... without going into details"

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LuisRodicioRodicio

Hi again Anne!

Alternatively. If the interlocutor gets heavy .... the comment I make is:

"Well ... or will I tell you?"

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Hiking13

I love that I don’t know how many times I have said I’m fine but in future saying it will make me think of your post and make me smile so I will better than before I smiled - so thank you. I am glad you had a lovely meet up I would love to join you all one day but can’t make it during term time as I am a teacher but if you ever have a get together in the school holidays I will be there

Love to you all

Sarahx

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Heady
Heady
in reply to Hiking13

Amanda, we will have to have a look at school holidays next time!

We will do our best Sarah, it would be great if you could make it.

Lots of love

Anne

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Dickenson2

It was a good day yesterday and we are lucky to have Amanda to organise it for us. I had hesitated about coming Anne as most people going are now ‘on the other side’ and although there were only three of us still dealing with the diseases I was glad I had made the effort. It was lovely to meet Ali B and catch up again with Liz and Barbara who have not been able to make a few of the get togethers xx

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AliBee1
AliBee1
in reply to Dickenson2

It was lovely to meet you too. It felt very special to be there on what would have been Nigel's birthday, I was totally exhausted when I got home but it was worth it. Big big hugs as you cope with day to day. It is not long since my whole life was revolving round Nigel and not knowing what would happen from day to day but now I have the time and sleep that I needed so badly it is so lonely. Good luck. Love Alison xx

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AnneandChris

Anne

That's wonderful

I AM FINE too!!

I realised just how tired I am the other day. Chris is going into respite on Friday for 10 days which will be good so am going to have some me time.

Glad to hear that you all had a wonderful time yesterday, I really must try to get up sometime.

Hugs to you all and keep on keeping on.

Anne x

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Tippyleaf

Hope respite runs smoothly and you can get some much needed rest and breathing space. Hope you can join us at one of our meet ups - they are rejuvenating!!

Love Tippy

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Heady
Heady
in reply to AnneandChris

Please read my reply to Nanny857 and make the most of your time off.

Lots of love

Anne

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AliBee1

You being there would be lovely. I hope that you will be able to. xx Love AliBee

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Satt2015

Fantastic Heady and very very true!

I often wonder why we say when we are FINE when we are not? Is this an English thing? We just don’t want to cause distress to anyone else? Well wtf not? From now on I’ll tell people what FINE actually means to all of US!

Absolutely loved seeing you all as always yesterday, these meet ups are amazing! You come away buzzing! Thank you everyone!

You are my family, the one that’s understands everything! X ❤️

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Heady
Heady
in reply to Satt2015

Are you going to publish????

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Satt2015
Satt2015
in reply to Heady

Lol

Knew you’d say that

Will do later x

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Katiebow

I think we will all be adopting the FINE response Anne and have wry smile as we say it, little do they know!

So lovely to see everyone again and it's weird that one by one the majority of the group have lost our loved one but still really want to listen and support those who are still travelling the arduous journey with theirs. It's difficult to say which part is the most painful but like Yvonne I'm glad that Ben is no longer suffering.

Thanks Amanda for helping to bring us all together again, and lovely to meet your Mum for the first time, you are a gem.

Till the next time, Cheers.

Kate xxx

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Heady
Heady
in reply to Katiebow

I don't think it's weird. We all know what others are going through and want to help in anyway we can to make their journeys a bit easier. There is a huge amount of knowledge between us, learnt the hard way, it would be a shame not to pass that on, if we have the opportunity.

I too, regret losing Steve, but I am so thankful that he is no longer suffering. One thing he did teach me, was to survive, and I shall do that in his name.

Lovely to see you again Kate, hopefully we will meet up again soon.

Lots of love

Anne

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AJK2001

I love it, even better than POETS day (P--- Off Early Tomorrow's Saturday). Thank you, I will be thinking of you when I have my wry smile :)

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Heady
Heady
in reply to AJK2001

I promise, it does make you feel so much better, looking someone in the eye and telling it as it really is!!!

Lots of love

Anne

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Brenive

Thanks for your description of "I'm fine". I say it all the time, If I told anyone how I really felt I think I would crumble and give in, PSP. will win , with Ivor .... but the big C . I will kick up the a..e. By the way I'm glad you all had a good day yesterday. ....Brenda xxx

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Heady
Heady
in reply to Brenive

Now you can tell people exactly how you feel and not worry about crumbling. With that little bit of knowledge that we are all there with you.

Lots of love

Anne

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dollydott

Hi Anne

So glad you all had a good day yesterday .

Im alright is what I usually say. I shall start using FINE when I'm not.

Thank you little things like this can really help.

Love Lynda 😊

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Heady
Heady
in reply to dollydott

It certainly has changed my attitude to saying I am Fine. Always feel that tiny bit better, as you say, "little things!!!".

Lots of love

Anne

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Railfan

These are great comments and though I'm across the pond from you I feel "FINE" too.... Only as the patient I think of it standing for;

FALLING, INCONTINENT, NEURODEGENERATING, EMOTIONAL

So with PSP no one associated has to lie when you say you are FINE.

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Katiebow
Katiebow
in reply to Railfan

A very apt interpretation from your perspective Railfan, I'm sure that Ben, my husband would have totally agreed with you. Here arcwe, as partners/children of sufferers, trying to make sense of it all and there are you actually having to get through each day with this disease taking grip. Thankyou for reminding us that we are all, in this together and all because of these wicked diseases.

Take care now

Love Kate xx

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Heady
Heady
in reply to Railfan

Love your interpretation, I am sure Steve would have agreed with you, although he would have kept the F**ked, as a great inventor of swear words, would probably have changed a few others as well.

Look after yourself Railfan, stay as upright as you can!

Sending big hug and much love

Lots of love

Anne

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Dance1955

I was about to say there’s no such thing as fine when you are caring for someone with PSP but yes there is thank you for defining fine 🥴🤣🤣

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Heady
Heady
in reply to Dance1955

My pleasure! Even if it only gets you through one awkward moment, with a private smile, then it’s been worth it.

Sending big hug and much love

Lots of love

Anne

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Jeff166

Major profound grief takes time to subside. Not go away. Just not hurt with a burning rawness. I had read it took 7 years. After my friend died 25 years ago I was surprised that I felt as badly as I did. I knew I would miss him. I didn’t know how much. At the 7 year mark the worst of the grief has dulled to bearable. Twenty-fives years later it no longer hurts but I still miss him. Unfortunately none of us probably has another 25 years to get to that point. If I outlive Larry I have a very good idea what is coming. I would almost rather die before him to avoid it.

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SewBears

I can’t remember the abbreviation words. Made up my own, FINE=F***KED in nowhere ever land.

🥴

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Heady
Heady
in reply to SewBears

Yes that’s probably more apt for sufferers of this evil disease, be they carers or their loved ones.

Sending big hug and much love

Lots of love

Anne

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David750

My wife (PSP) was always saying "I'm fine". I read your post to her Heady, which she thought the definition very apt indeed, though not 'neurotic'. 'Numbed' was more how she feels. One can play around with words but in essence we thank you for the deeper meaning.

David

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Heady
Heady
in reply to David750

It’s wonderful how everyone is adapting FINE to their own situation. Hope it gives your wife a little giggle next time she has to use it!

Sending big hug and much love

Lots of love

Anne

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David750

Thanks Anne, told the morning carer who had a laugh and then went to my wife in the wet room waiting for her shower and asked her how she was, "fine" she said and they both burst out in hoots of laughter which went on for ages. The carer is going home to tell her husband who always asks her how she is when she comes home and she has always said fine!!

Thanks again

David

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Heady
Heady
in reply to David750

Wonderful!!!

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AliBee1

I love that. How true. Thank you. Made me smile. AliBee xx

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Heady
Heady
in reply to AliBee1

And hopefully, next time you use “I am fine”, you will have a little giggle as well!

Lots of love

Anne

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Servena03

Oh heady you have started a wonderful thing with FINE, I have used it several times today, put a smile 😃on my face, I felt great each time as I thought of us all just our family, Brills, as I like a lot of us right now is having a rough time at present.

All our hearts go out to all of us, can't do without you 💕

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Heady
Heady
in reply to Servena03

Wonderful. Keep it up!

Lots of love

Anne

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easterncedar

I'm reply 86! Seems like a record. You have a fan club here, Anne, my dear. Justly so. Love, ec

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Heady
Heady
in reply to easterncedar

Think NannaB got that a long time ago. I seem to remember one of her posts getting into the 100’s. Thank you anyway!

Lots of love

Anne

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