100 days

 DD’s health plunged off a cliff in December last year…it has been failing for years…every time I reread old posts I’m always bemoaning the fact that their health is deteriorating. Well last December they officially accepted that they had moved from moderate to severe ME. They are totally housebound, the 2 doctors appointments they managed in January/ February were brutal and not repeatable. When they needed blood tests this week a nurse from the Practice came out and sorted it, luckily they were very nice. But the PEM has still hit and DD is currently struggling to stay awake for more than a couple of minutes at a time.

Today marks 100 days since they last left the house at all. Not a good milestone. The same week they had their 33rd birthday…DS2 and I went to York to pick up cake which made the day slightly festive. DP obviously ignored the day totally…as did my DF. The last time my parents remembered DD’s birthday was 2019…so 7 years ago. The contempt I feel for them is mountainous…the fact my DM is dead diminishes her part not at all. My DB does remember birthdays …with a card and £20, not exactly putting any effort in! He hasn’t contacted me once since I dropped the rope heaven only now’s how many years ago… DD had been sick a few years but that many…but he found it all too depressing. I checked back and first mentioned DB’s lack of interest in DD’s illness in 2015… no idea how long before the he made the comment but it’s been a long time and he is plenty capable of picking up the rope if he’s bothered. Though to be 100% honest if he did reach out at this point I’d probably grey rock him. Once DF dies I’m very unlikely to have any contact with him at all…and I won’t miss him which is kind of sad because I still miss DB1 even after nearly 40 years.

I do find the lack of any support hard, I rarely get a full nights sleep and I’m on call 24 hours of every day. I do it all willingly and happily, but it would be nice to be seen, for someone to say ‘thanks’. Not DD…they are overwhelmingly grateful which is sooo unnecessary…of course they deserve all the care I can offer!

We had a heatwave over the May Bank Holiday…temperatures over 30C, which really affected DD and made them very poorly. They looked into air con and we found out it was very affordable and so they are getting a unit sorted in their room the middle of this month. The process will be horrific for DD…moving stuff in their room and the exhaustion of needing to move…but, hopefully, worth it in the end. The way temperatures are rising is really terrifying…I remember when the only places in the UK that got over 30C were in the south and usually in August…now its anywhere and looks like it can be anytime. Glad it’s cooler currently. 

In better news it looks like DS1 is going to get the keys to his house very soon. Not that this means he’ll be moving out anytime soon…the house needs a massive amount of work but he will be so happy to be able to start the work…he was really lucky and only actually looked at 3 houses and found this one very quickly…it did totally max out his budget but I think he will be very happy in the house once he can move in and then make it over to his ideal place over time. Really pleased, I wasn’t sure he was ever going to be able to move out. 

 

And here I am again

 After not updating anything for months I’m now here with another update in less than a month. It’s not for good reasons.

DP went back to work after his eye operation and we had a week of peace and quiet while he was in Copenhagen. He was then supposed to have a couple more weeks away…which didn’t upset me. Instead his eye operation failed and he needed the operation redone in an emergency again. He’s been less clingy and pathetic this time but it’s not fun having him around all the time being rude, grumpy and self absorbed!

DD had to cancel two hospital appointments for tests…cardiology and an MRI for their liver. They had a doctors appointment and the exhaustion of getting downstairs was so intense they were vomiting and had to go into the appointment clutching a mixing bowl. They had to be realistic and accept getting to the appointments was not sensible and they are so exhausted and in so much pain they really don’t care. It’s a shame they weren’t getting their symptoms investigated years ago when it might have made a difference…it’s too late now. Life would be easier for them if they were sleeping most of the day which was how previous flares have gone. This time the pain is so aggressive they struggle to get any sleep at all.  All of which makes their life even more unbearable.

In wider news Trump has decided bombing Iran is a good idea…he doesn’t appear to have any end game in mind…hardly a surprise given his lack of intelligence, dementia, malignant narcissism, fragile ego etc.Tehran is already having poisonous rain because of the massive bombing of oil facilities never mind the deaths, including a girls school which was bombed twice! The effects are not going to be good and given how insane and psychopathic Trump and his acolytes are they may well decide to drop a nuclear bomb. Israel is obviously very happy with this state of affairs…I have read a number of dystopian novels with Israel nuking the Dome of the Rock…I may actually get to see that happen…Israel is a seriously evil state.

DD has been advocating for a while to get print copies of important books incase online books…which lots of mine are…start getting amended or deleted. DS1 has accumulated a massive stack of DVDs so he can still access the films he likes as so many are being deleted from streaming services. Digital book burning was never on my list of events I anticipated but again it’s something I may get to live through. We have also got a few survival bits and pieces like a camping stove and I’ve stocked up on batteries. We won’t be able to manage for more than few days if the electricity goes off permanently but we can cope for a couple of days. I can see 2026 is going to be a busy year!

Finally getting to update

 The last update was in October and it’s now nearly the end of February, that shows what kind of time we’ve all been having.

Lots has happened

• Aidan’s bathroom has been finished. It’s very shiny and he loves it. Fortunately it means DP has totally abandoned the other bathroom which is all good.
• DS1 has not only sorted his mortgage, which he did over New Year but he found a house and is in the process of buying it! Really happy for him, it’s going to need a huge amount of work but it will be worth it to get a house I imagine he’ll be in forever.
• DP was whinging about his vision in one eye being off…didn’t stop him driving. He was referred to the eye hospital and it was a detached retina…he really is falling to pieces! Anyway he had an emergency operation and was off work unable to drive for 2 weeks…he was soooo needy and following me around everywhere I can see him being retired will be heinous! Anyway he needs a second operation which is booked for the end of March, hopefully he’ll be less annoying this time round.
• The bad news is that DD is now bedridden. They have been declining for years and getting increasingly poorly for a year or so but the final drop was still a shock. It was just before Xmas, after a hospital appointment and they were finally, definitely severe ME rather than the borderline severe/moderate they’ve been insisting they were for years.Unfortunately this means we have had to stop swimming which they loved but they struggle to get from the bed to their chair! The situation isn’t helped by the extremes of pain they are in all the time, which means they get little to no sleep. Not fun.

Xmas was fine, I ended up seeing DF on Xmas Day for lunch with DP and DS2 but also just before with DB2 and his wife. DS2 decided he wasn’t well that day so stayed him in bed with DS1 keeping an eye on him. Not totally sure what anyone got out of the experience…after DF snuffs it I will probably not see either of them again. I occasionally email my cousin and I have a better relationship with her than I do with my brother!

I phoned DF in the new year mainly so I could vent about how scary it is with DD being so very poorly and how much DS1 was struggling to find a house he could afford that he wanted …  DF had no interest in hearing any of it. All he wants are ‘conversations’ where he tells me about his walks and I tell him everything is fine. Not particularly supportive or helpful! To give him his due he doesn’t huff and roll his eyes if I deign to speak which DP very much does…he really is getting to the point where he has no filter left and he is not a pleasant person and has zero interest in anyone but himself. Not sure when he last spoke to DD at all, not a conversation he doesn’t do those with anyone, but just spoke to them…years ago I would guess. He does try to monologue DS1 occasionally but doesn’t get very far. He has been aggressive and unpleasant and bullying to DS2 for years and that’s not stopping…even though they do plenty together. He’s not a good person. He tells me how witty and clever he is on Facebook and will monologue at me about shit he’s seen on YouTube but I’m very deaf and can ignore most of it. I haven’t done any washing, shopping, ironing, cooking or cleaning for him in years. Not sure what he’s getting from staying…a pleasant home and someone who sorts the upkeep of the house I guess. I know what I get and its money…he earns and we would struggle to survive without his money…which is going to be fun when he retires! Still I’ll cross that bridge when I get to it.

Hopefully we get more good news than bad over the course of the year. The world news is scarily bad…Trump is plainly dying and has severe Alzheimer’s which is less than ideal in someone who has access to the nuclear codes! He is being managed by a bunch of heinous white supremacists. We have Starmer who has no convictions political or otherwise and is probably going to let the fascists in Reform win the next election…no ideal. The Epstein papers are being released dribs and  drabs and  show a network of horrific abuse and entitlement …no one is going to be held accountable for any of their crimes but it does show how we have ended up in a world with no morals or empathy.