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
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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.
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. ❤️❤️❤️❤️❤️
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.
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.
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
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!
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.
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.
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.
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.
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.
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
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.
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.
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
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.
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.
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
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?
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
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.
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
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.
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.
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.
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.
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.
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
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
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
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!!
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 ❤️
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.
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.
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
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.
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!
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
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.
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.
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!!
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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Wish I could have seen you all Audrey
I'm home!
I Think I'm Going To Buy Me A Helmet.
I'm new and Wanting to just put down my thoughts...
\"When I'm gone\"
