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Stormy weather...and sleepless night.

For the third and final time!  I posted here about 3am and it keeps disappearing.  Have I done something wrong Admin?

Outside the storm is raging.  Living in a rural area, exposed on the edge of the Atlantic, (a few fields away from the sea to be exact) we get to experience  the elements in all their glory.  Over the weekend, rain, hail and sleet hammered against the window panes threatening to break them.  The weather has worsened so much.  My four cats have developed Velcro claws when this type of weather descends.  It is simply impossible to prise these cats from the various places they languish, lazily, as cats do...backs of chairs, sofas, beds...Tonight however, three voluntarily went outdoors at bedtime.  The fourth is a demon.  An evil eyed, total black beauty.  The bane of my life.   

I took down my small Christmas tree today, along with the few bits and bobs of tartan, fairy lights and ornaments.  It was a slow process and my to-ing and fro-ing to the box that they live in, left me exhausted.  I use a three wheeled walker indoors which seemed to be particularly clumsy today.  The demonic cat is petrified of it for some strange reason and kept darting around it, trying to keep clear, but almost causing me to trip over my own feet several times.  Once I had everything boxed/bagged, hubby stored it all away in the spare room.  I told myself for the umpteenth time, I'm NOT doing this palava  next year.  Why do I still bother?   It surely isn't worth the effort.  Then I threw some left-overs on a couple of plates and called it dinner and collapsed in the armchair, acutely aware of a painful area on my side.  I probably twisted  awkwardly without realising it. 

I retired to bed for the night around midnight.  Weary and bad tempered, tearful and a little scared.  Weary because I just was, and bad tempered because I hate this damn disease and resent what it has done to me.  What it has stolen from me.  I feel I am a shadow of my former self, and I hate it so much.  Tearful and scared because I am waiting for a phone call this week with a date for surgery for (hopefully) next week. 

A cancerous lump discovered in my breast two weeks before Christmas is to be removed.  I am angry because I feel ppms is enough to have to deal with.  Diagnosed just over two years ago, in the space of one weekend!  Without any symptoms or warning.  It has gathered speed since last Christmas really, and I notice the diminishing of my capabilities/abilities almost on a weekly basis.  Is this not enough?!  Now I will need day surgery, and six weeks after the procedure I will undergo five weeks of radiotherapy, for five days each week.  This will take place at the "centre of excellence" in a city two hours drive from my home.  Every day, there and back, for five weeks.  My husband, my carer, will be doing the driving.   He now does pretty much everything indoors where I can no longer do so.  This is just another tiresome task he will have to endure without complaint.  Our early retirement that we worked so hard for, was never meant to look like this.  Am I feeling sorry for myself?  Yes, I suppose I am.

Demon cat had no intention of settling down on the bed, as I tried to sleep.  As the wind howled and raged, he jumped on and off the bed.  Tormenting me as he walked along the length of my body, eventually wanting to go out.  I got up and shuffled to the back door.  As I slid it back gale force wind whipped in and demon cat ran back to the bedroom.  I'm sure I heard him laughing at me. I was swearing like a trooper as I shuffled back, and chased him (visualise it!)  back towards the open door and eventually outside. 

 So, I have rambled and ranted until it's now almost 3am.  I will return to bed and try to sleep once more.  Good night, if anyone has read this far.  Tonight it's not just the wind that is raging. 

All i can say to you is i agree isnt ppms enough to bare without anything else.I hope everything goes well for you try to keep  positive, i know it will hard.Im glad we have this forum to sound off on to people who understand this dreaded  disease. Please take care Joxx

I hurt my right leg some 12 years ago, but have only recently been diagnosed with PMS... I’m guessing that an extra P will be added after more tests. It was quite embarrassing always saying that I have a bad leg, at least now I have a diagnosis. 

I have gone from limping awkwardly... and using a walking stick to potter around, or a ‘wheelie walker’, as my orthopaedic consultant called it, for walking away from home... to nearly unable to stand safely. I am too scared to climb the stairs these days as my knees are so weak when I get to the top, that I just crumble and fall onto my back. 

You do have a mammoth task ahead of you now. You are so skilled with writing, have you thought of starting a blog...? It might help you vent, like here, but blogs give other people a reference point, a permalink, so that they can pass on the link to others.

Anyway, just an idea...

Anne ❤️

 

Thank you both, Jo and Anne.  Today is a calmer day all round.

So many people over time, have suggested I write a blog.  Not just about my ms experiences, but life in general.  I honestly wouldn't know how to start one.  I feel it might be something I would enjoy now.

Most website software has a blog feature. You need to think what you want to achieve... basically, do you want to spend any money on it...? There are plenty of free ones around, but if you want to spend a bit of money on it, it is probably worthwhile having your own domain name. Hunt around online for website builders, making sure that they have a blog feature. These are so easy these days, so don’t be conned into paying out for people to design things for you. 

If you find one you like, tell me which one and I’ll look at it to see if it’s good enough... ❤️

 

Hi, yes MS is more than most of us deserve really, so stresses like this are truly not needed!

Yes, blogging is a good emotional outlet. I do it on Overblog, my PC skills aren't great but it's ok.

Take care of yourself

Sonia x

 

I hope your having a better few days,i have been thinking of you this morning .I know when i have a bad time of it a few days later i cope a bit better ( we have to don't  we ).Take care Joxx 

Hello again you lovely people.

Told I had cancer 2 weeks before xmas. Now I have my date for surgery.
It's on my birthday next week. Sheesh! I could think of nicer things to do on my birthday!!

wishing you lots of luck with your op,you might have had it by now !! if so sending lots of love and best wishes for a speedy recovery.

J  x

It does seem so very unfair that with progressive MS to deal with we then have one more huge blow!

I seem to have spent the whole of 2017 dealing with lung cancer, it’s been a nightmare and is not quite over, I will have yet another scan in March to see if the tumour has finally gone. I spent weeks having radio therapy and chemo then three weeks in hospital throwing up after every meal, eventually that stopped after six weeks and the tumour had shrunk.

It was inoperable when it was found because it was touching my heart and was also tangled up in the pulmonary artery but as it was now smaller it was possible to operate but the surgeon wouldn’t do it as it was a major op and he didn’t think I could take it because of MS! My husband eventually found an amazing guy called professor Leen who operated on me in London and as I said I’m now waiting to see if it was successful.

I’m only telling you all this so that you will know, yes,it’s a really hard journey, probably the hardest thing I’ve ever endured but I did it and I’m sure you will too, I know how scary it is but be strong and be positive and like me you will get through it!

Wishing you all the luck in the world, take care of yourself, 

Nina x

Thank you for sharing your story Nina.  You are strong indeed and I wish you well and continued good health.  

The irony of it all...my husband's sister abroad, was diagnosed with inoperable lung cancer the week before I knew my results.  We will all "get through it", because quite simply, we have not been given a choice.  x

I cant believe  how strong you are nina you're  an inspiration like so many others  on this site Take care.xx

Thank you both so much, it means a lot!

Nina x

Hello.

I've just read this Poppy. I spent a very sleepless night during the storm in a Travelodge room where the window didn't shut properly. 

It was my friend's funeral the day after. And a stormy affair it was-only on the outside of course. 

I wish you ell with your imminent operation. Both you and Nina are incredible. I'm struggling a bit at the moment but I'll bide my time and gather my strength.

I do my blogs free with Wordpress.

Steve x

Mrsj and Steve.

 

I'll add a copy/paste from the Everyday thread for catch up.

Thank you Steve.  Chin up.

 

You're all amazing with your support and kind words.  [wink] Moira, I couldn't agree more!  As it was my birthday when I was having the surgery, the "celebrations" were on hold.  

Surgery happened Wednesday afternoon.  Lumpectomy and 2/3 Lymph Nodes, to check if they are cancer free.  Discharged 7pm that night, the prospect of a two hour drive home in torrential rain, didn't fill me with glee.  Husband reversed our bus and I struggled into the passenger seat, gingerly, as he put my motorised chair up the ramp and closed the back door.  We drove home quietly, each wrapped in our own private thoughts.  I slept fitfully, and turned over with difficulty through out the night. 

Since getting out of bed, at home on Thursday, day after surgery, I have had so many texts, calls and visitors and most bearing gifts.   All very lovely... I was up and dressed Thursday and carried on as normal, like any other day.  Friday though, it all caught up with me and I slept through (with demon cat for company!) until 2.30pm.  I didn't dress and luxuriated in my dressing gown all evening.  Unheard of for me...and it felt great!  [laugh]

My neighbour, who keeps hens, came with a dozen fresh eggs, daughter with a birthday cake she and the children made, plus chocolates and flowers, my (very elusive) brother and wife with a pot of miniature daffodils and chocolates.  My sister and her husband came the evening after my discharge, complete with a bbq chicken, homemade soup and pastries.  My poor husband was thrilled not to have to organise dinner that night.  It was so thoughtful and so practical.

I did find it strange though, that my brother hasn't seen me for two years, only found time to come and say hello under these circumstances.  Still, it is nice to feel cared about.  Everyone likes to feel wanted and needed, don't they?  So, happy days now.  I feel good.  It will be about three weeks before I know the results from Pathology, but I'm confident all will be well.   Fingers crossed..

Im so glad you had a nice day it was nice to read a nice story instead of the usual doom and gloom  in the world. Joxx