Hello Friends!
Happy May Day!
I haven't been around for a while as I'm not in a good place at the moment. There are times now when this horrible medical condition is overwhelming and I am hoping next week's much needed appointment will help sort something out to enable me to resume some degree of normality.
I have been trying to think what aspect of Parkinson's to address but there are so many it is difficult to know where to begin. There are the day to day living experiences and changes, the challenges of adapting, of not being able to adapt, the financial burden {something all people with any sort of disability get lumbered with}, transportation issues, mobility issues, mental health issues, finding reliable help, even finding unreliable help, or just plain pouring out my angst and misery at the position in which I now find myself issues. There's an endless list. I promised myself I wouldn't wallow, but these days it is sometimes difficult not to. Add to all of the above, the ever increasing worries over our NHS and medication shortages and a perfect storm is brewing.
The last few days have been particularly difficult with the arrival of such gorgeous weather at long last. Yet, here I sit, unable to go outside for very long because I am unable to put my sun screen on evenly, and all I can do is watch the listless clouds drift slowly by and ponder on what I would have been doing in these glorious spring mornings and evenings {afternoons are too darn warm}in what should have been the fun years of my retirement.
I hadn't planned to retire upon reaching State Pension Age, but it has been forced upon me. My plan had been to either work a small part time job or work from home selling my makes at craft fairs or on Etsy. I was to have plenty of free time to carry on hiking and rambling across my beloved Shire. It was not to be, ah! the best laid plans of mice and men often go awry, indeed they do, in my case they went awry and away.
It was not to be, and it is starting to become difficult in accepting that I will never be able to do again the things I hold so dear.
Oh, but what a difference in a week! Ten days ago I sat huddled under a blanket keeping warm, now the last few days it's been a struggle to keep cool! At 5:30 a.m. this morning, as daylight began to creep over the east facing hedge, I was opening the windows of my cottage wide to let in some cooler air, trying to keep the living room as cool and comfortable as possible before the midday heat arrives. I've still got my vest on; I've cast not a clout but might today as it's already hot indoors. Ironically, next week it seems we shall be glad not to have cast those clouts as colder days are predicted again. One thing that is helping me keep hydrated is my new water bottle by Rhiannon Art
A little pick me up treat that will be useful in the hot summer days. It comes with a choice of caps, straw, flip top, or wide mouth and holds 750mls of hot or cold liquids. Proud to be Welsh!
Until next time
Debbie xx
It does get complicated, doesn't it, managing chronic illness and all that goes with it. I'm especially sorry that it's a challenge for you to be out on lovely days as there are times when they seem more rare -- and after a challenging winter, more welcome. (Our weather is erratic too -- a few days ago quite warm and now cooling off.) Your retirement plans and mine were the same -- after being done, we would do far more creative work. I ended up retiring early for medical reasons too, although there have been some improvements, which I think proves that stress plays a big factor. I hope you can find some loose, cool summer tops and pants that will cover you and let you enjoy the outside as it gets nicer and nicer.
ReplyDeleteHope you get to that appointment and find more ways to get help and feel free to moan on here - it's one place you can .
ReplyDeletePlans quashed is a real b****r. I often think of our plans for retirement that disappeared in 2018.
Then have to pull myself up short and remember I'm OK.
Hope you have been managing some painting/drawing.
That's one Big water bottle!
Like you, I have a progressive illness, and my daily readings book has been about 'lament'. It's OK to count your sorrows as well as your blessings... to lament the future that has been swept away... I need 24 hour oxygen now which is a bit of a game changer for travelling! It's still possible, but not easy, and limited. We've been away for a few days at a time to a holiday cottage not too far away, and it's doable.
ReplyDeleteI can rejoice in that this condition (scleroderma and lung fibrosis) gives me no pain, unlike things like arthritis, and that I can still have a full and creative life just so long as I am prepared to redefine my original ideas of 'full' and 'creative '!
But there are days, I confess, when it doesn't come so easy...
Sounds like you are going through some of those days... I hope you emerge from them and find your cheerfulness soon!
Don't be too hard on yourself. It would be impossible not to feel overwhelmed now and again, under the circumstances. You can wallow all you like.
ReplyDeleteAnd lets hope this warm spell of weather continues, as I'd quite like to cast some clouts very soon.
Your water bottle looks great! Welsh? I'd never have guessed ;)
Sending you love and hugs, my friend. I can only imagine how frustrating your life has become and how helpless you must feel at times, especially to be at the mercy of others for everything. I do hope at your appointment that some, no, lots of good will come out of it! Sending healing prayers your way~
ReplyDeleteAh, Deb! I send you love and hugs as you navigate this time in your life. Not as you had planned, exactly, though you continue to be a blessing to others. I have been enriched by our friendship. Hoping for good to come from your appointment! Love to you across the miles!
ReplyDeleteIt sounds as though you're having a real rough time, and I can't imagine how bad it is for you, but sending you love and prayers and hope you have some moments of joy in your garden, which is quite beautiful.
ReplyDeleteSo sorry Debbie about the difficult time you are having and I do hope that next week's appointment will prove helpful for you. I love your new water bottle. I am sorry for lack of comments recently but as you know I have had problems which now seem to be resolved! Sending love your way and thinking of you. Take care.
ReplyDeleteSo sorry you are having such a rough time.
ReplyDeleteFeel free to have a rant or moan whenever you want to ... sometimes it helps.
I do hope your appointment next week will prove to be helpful.
I do like your new flask, it looks great.
Sending positive thoughts and good wishes to you.
All the best Jan
We never know just what like has in store for us,=. My sister developed jealth problems in her late forties and hasn't been able to go out to work since. In fact she is more or less housebound. She also lives alone which I think makes you dwell on things more so I ring her at least twice a day - morning and evening and we text all the time which makes it seem less that she is alone.
ReplyDelete