It was a Mum and Son weekend.
Pip stayed with Sara, Tom and Oliver and Ben and I hung out together. It was meant to be a quiet weekend but in the end we had two lots of garden visitors at various times on the Saturday afternoon, with rest breaks in between. Living with a chronic illness and one that is in a significant flare is always tricky when it comes to socialising. I find sustained conversation when I am this unwell very exhausting and in turn it exacerbates all the horrid physical symptoms. However I am mindful that Ben and Pip need bright spots in their day and so I said yes to the visitors knowing there would be a pay back at some point.
This morning I dropped off some items for Dave en route to having lunch with ST and Ollie and I made the mahoosive mistake of not taking the lift and using the stairs 😓 By the time I reached his ward I couldn't walk in a straight line and the muscle tremors had kicked in, oh dear. There was no sign indicating that visitors were not allowed and a nurse even let me through the doors but I was met by a staff nurse who wouldn't even let me wave at Dave from the corridor. I know they are doing their job but I must admit I was sad.
Sara made a really lovely lunch but the visit was marred by my feeling very poorly. In fact I even forgot to take pictures of the visit which was a shame as I know Dave would have loved to see how they were all doing, ah well that's life.
Once home I staggered upstairs and crashed on the bed and that was me for the remainder of the afternoon (I've spared you the photo of me looking ghastly!) Pip occupied herself downstairs and Ben took charge of the tea, thank God. I had a very tired WhatsApp chat with Dave after tea and he has finally recognised that he needs a transfer to the neurological rehab centre in Preston. He is currently on a geriatric rehab ward and a significant number of the patients have dementia. Consequently he was disturbed during the night with staff dealing with folk going walkabout and looked quite dispirited this evening.
We are spending part of this forthcoming week in Cumbria visiting family, the kids and I need a break and my Dad is hoping I'll trim his hair, poor guy must be really desperate! So tomorrow and Tuesday are home days packing and tidying and with a bit of luck Dave should be transferred to rehab before we leave on Wednesday.
12 comments:
Oh San. What a rough go of it you all are having! I am well familiar with the crash and fatigue from the effort of conversing, and also from overdoing it physically. Chronic illness and disability are heavy crosses ... Sending you prayers and hopes for rest this week during your visit! Lean on Jesus :-) xox
Oh! I have so much to catch up on! I'm not sure where to begin . . For this Sunday's service, First Unitarian Member Abbey shared about having chronic illness, and how one's strength slowly ebbs as the day goes on, and how difficult it can be to pace one's self and accomplish all that one wants to accomplish, while confronting the sadness and frustration that accompanies so much pain, and how strengthening making/creating/crafting can be, It was a very moving and honest testimonial, and I felt grateful to hear her story. The service is on their facebook page, so you can listen one day if you would like. Here's the link. She speaks at about 34 minutes in . . anyway .. I love the pic of you and Ben and I think it wasn't very nice of the nurse not to let you wave to Dave, but I'm glad friends visited and that Sara made a lovely lunch and that you will be going to Cumbria for part of this week, and you can trim you dad's hair! :D
I am so sorry to hear this San. I am not really surprised that you are feeling worse when you have so much on your plate, I am sure that some, if not all, of your symptoms are worse when life gets too much. I have just read a really interesting book on chronic illness in women, it was a lovely read, it was by Lucy Pearce who you may have come across from her Dreaming Aloud blog? Anyway the book is called Medicine Woman, I can thoroughly recommend it.
I am sorry to hear that you were not allowed to wave to Dave after all the effort you went to to get to his ward, I do hope he is moved to Preston soon and is able to continue his treatment there.
Holding you in my thoughts San as you navigate through another difficult week without Dave by your side xxxx
The hospitals here are the same: You cannot visit a patient, unless it is a minor. Our pastor is not even allowed to administer the last rites in one of our hospitals!
Has Dave been transferred? Is it a long drive to Cumbria? Your dad must be anxious to see you.
I hope you are feeling better by now, I know how hard stress can be. I always get horrible tension headaches that don't respond to pain killers.
No space at Preston Neuro Rehab but the team have made a referral to the Sue Ryder neuro rehab also in Preston. My health has got worse and the heat hasn’t helped, I have been using a walker with a seat when out and about. Cumbria is a one and half hour drive from home and even if I say so myself I did a reasonable job with my dad’s hair :-) xx
Thank you lovely lass ❤️ Please see my comment to Eva for an update xx
Thank you dear friend, will take a listen 🙂. Please see my comment to Eva for an update xx
Thank you Penelope I have left an update on my comment to Eva, God Bless you xx
How does he like the new place? I am sorry you had to use a walker, but it is wonderful that your dad has a new hairdo now. I really should go and get a haircut, but it is so complicated to do this right now.
Ahhh, my comment didn't save when I left it a few weeks ago. Grrr. I wonder how you all are now? We are returning from Northumberland and I thought of you as I walked on Lindisfarne.
I said in my comment last time, I'm so sorry you were so shattered and didn't get to see Dave. I hope he will be able to go home at some point soon.
San, I miss your updates. How are you all doing?
Just catching up with your posts and hoping things have improved by now. Try and get some rest time. Easier said than done... xx
Post a Comment