Here we can all be heard for a little while. Part 3

Waves_and_Smiles

Hope AM feels a bit more comfortable soon, Calley!

Yes when they said a chemo drug it was a bit of a shock to me too! Apparently in it stops vasculitis in the same way it stops cancer. So far the plan is to give WaSp 6 sessions then a months break and repeat. If they can force it into remission he can go onto a milder immunosuppressent indefinitely.

dandy-candy

Was - Glad to hear things are moving on with his treatment. Feeling bored is an improvement on the scary paranoia! Smartphones are brilliant, does he have lots of data he can use?

Calley - I hope AM gets the pain under control soon. How on earth did u snap a plug? U must be super human!

My therapist yesterday told me when I get into panic mode to try breaking it into chunks, and I actually needed it today which was sooner than expected. DS2 is in Canada on a uni exchange year and his uk uni has him covered for insurance. He chose an optional trip to USA as part of the course and leaves on Sunday. He found out today his uni doesn’t cover him for this because it’s outside of Canada. I said ok I will get travel insurance for you. I then found out all the normal places won’t cover you if you aren’t departing from the uk (he’s already in Canada). I phoned one and asked the lady what I can do, and she kindly said there are companies I can get it from but they are specialist ones and to google “travel insurance already abroad “. I managed to do it, and now it is done. I’m so relieved and tbh a little bit shaky, but omg I did it without tears or hysterics which is my usual reaction. I just hope he doesn’t actually need to use it!

Waves_and_Smiles

Well done, Dandy! I Hope you are proud of yourself for coping so well!

MU, You have been through a lot and I agree talking it through could help. I was referred to longterm psychotherapy by a psychiatric social worker through social services. I don't know if they will still do that though.

We have no idea when WaSp will be out although the consultant thought maybe look at 2 weeks time. It is dependent on how fast his lungs and kidneys heal rather than the vasculitis itself at this point.

I am coping ok, eating a lot of ready meals and salads! I do have the occasional sobbing breakdown but right now I am so focused on WaSp that I am not looking at myself too closely. If I follow my usual pattern I will hold it together for now and go to pieces in a months time. When a crisis happens I tend to go on autopilot and not feel anything much until it is safe to do so. It is a coping strategy from my teenage years which is useful at the time and not so great later.

calleyw

WaS,


You are doing great. Yes it is a shock when they tell you they need chemo!!!! It is big guns to bring the inflammation down. And then the immunosuppressent to keep the immune system dampened down after that.



Mu, AM has zapain (co-codemol) and is taking ibuprofen as well. The pain seems to be taking the same path as when he broke it. Pain for the 1st few days and then it tailed off.


Massive hug you are dealing with a lot at the moment.


Dandy candy, I do too. I hate seeing anyone in pain let alone the ones you love. Your guess is good as mine. The 3 way adapter feels light so think it must have been a cheap one from somewhere. I just pulled it out the socket was not until later when I went to plug it back in again I was i like eh?????


Thank you to everyone for the kinds words about AM. I was so stressed later in the day of the op. just over thinking and tired did not help. He is rather chirpy. But he is signed off for 6 weeks!!!!!


Everyone take care and hope you get rest and have managed to eat and get something to drink today.


Hugs and squishes and handshakes all round


Yours


Calley x

jobbingmusician

Morning all!

HBS - yes, that does sound a bit like harrassment, even if unintentional. Are you OK though? It must be very stressful, accusations like this!

Melly - thank you so much for giving insights into how people can feel in intensive care when they're feeling unwell. I learnt a lot!


MU - GPs are often not great at knowing what's out there. If you ring your local Mind they *might* provide counselling themselves at a reasonable cost, but they should know what else is out there even if they don't. Or just google 'affordable counselling [your area]' if the GP doesn't come up with anything.

Cally - glad to hear AM is a bit better - hope you're feeling more relaxed x Thank you for all the great advice you have been giving, and for all the squishes!

Dandy - sooo glad it went well with your therapist. Are you going to stay with them now?

SSDD23 - personal identity is sooo confusing, isn't it? Your post reminded me of a book a friend of mine wrote, or rather edited. You might find it helpful if you can get it from the library. It's a collection of people writing about what it's like to be them. I found it quite interesting how other people constructed their self-identity. I'll give you the Amazon link because that's how I checked the title, but best to see if you can borrow it from library maybe? https://www.amazon.co.uk/What-Feels-Like-Be-Me/dp/1846943620/ref=cm_cr_arp_d_product_top?ie=UTF8

WaS - keep the good news coming and well done on holding things together so brilliantly!

Hugs and squishes to all, especially hummingbirds (you know who you are!) xxx

calleyw

jobbingmusician wrote: »

Cally - glad to hear AM is a bit better - hope you're feeling more relaxed x Thank you for all the great advice you have been giving, and for all the squishes!

JB,


Thank you. You are very kind. Yes very much. But all the driving is getting to me a bit. Finding it stressful and because I have issues with the automatic hand break. I am now very stressed about parking on a incline.



Squishes are what the world go round :rotfl:being serious for a min though. I know a lot of people have issues about being touch. But there is such a thing called skin hunger. Its about the need to be touched in a non sexual way such a hug.


Everyone take care. Its windy here so please be careful if you have to go out.


Yours


Calley x

dekaspace

Guess who messaged me yesterday? That relative who owes me money begging for his partners family abroad as her sister in in hospital AGAIN (yeah right) I said no, and got "but its an emergency" I said "maybe your partner can pay out of the money you have been giving her" this made him silent and he hasn't got back to me since.

dandy-candy

Waves_and_Smiles wrote: »

Well done, Dandy! I Hope you are proud of yourself for coping so well!

Thanks WaS, I made a little, it was not like me at all!

jobbingmusician wrote: »

Morning all!

Dandy - sooo glad it went well with your therapist. Are you going to stay with them now?

Yes I’ll stick with her for now. I haven’t booked my next one as she said “Just call when you need me” which is fine as she always fits me in at short notice.

dekaspace wrote: »

I said "maybe your partner can pay out of the money you have been giving her" this made him silent and he hasn't got back to me since.

I’m very glad you told them where to go. Stick to your guns.

The neighbour rang my door and hour ago to say she had hit my car as she pulled in to park. She’s scraped the front wing but I’m hoping it can be t-cut out. What I find majorly annoying is there is 3 car lengths empty in the bay to park in front of mine yet she turned in and hit me :mad: She said she will pay but my car is 11 years old and tatty so I’m not sure if it’s worth it. My DH will look later when he gets in.

Waves_and_Smiles

Hang in there, Calley! It's tough on you just as it is on AM, you were already carer to your ex-husband, now you are doing the double the job. Have a squish.

Stick with it Deka!

Argh! How annoying Dandy! I really hope the damage isn't too bad.

I was up until 6am. Storm Hannah hit here and brought hail, hail makes the car alarm go off. It first went off at midnight, the car is quite a way down the road so I had to dash out in my pj's in the hail to turn it off. It did it again at 2am so I just sat up until the storm passed.

WaSp is doing well, if bored. He should have had another plasma exchange today leaving one for Monday. If all goes to plan he is still booked to start chemo on Wednesday.

calleyw

Waves_and_Smiles wrote: »

Hang in there, Calley! It's tough on you just as it is on AM, you were already carer to your ex-husband, now you are doing the double the job. Have a squish.

WaS,


Thank you. The other day while I was out with my ex and AM. AM said it was like herding cats :rotfl:


That is the thing I am now carer for 2. And yes it it is hard work. No wonder I am shattered more than usual :rotfl:


Yours


Calley x