Having a really hard time at the moment. Last Tuesday my hubby suddenly collapsed in excruciating pain after having tummy aches for days. I had gone over the road to get some milk and came home to find my front door open and the warden of our sheltered scheme in my hallway. My hubby had pulled the cord for assistance. I was frightened how he had suddenly gone from a tummy ache to rolling on the floor in agony within 5 minutes. We waited for an ambulance for 2 hours. Tests showed that he has loads of gallstones AND appendicitis! He cannot be operated on until his gallbladder is less inflamed and, of course, they are keeping an eye on his appendics (sorry about the spelling). I have suddenly gone from the one being looked after to the carer and I am so knackered. Those who know me know that we have my 93 year old mum living with us and, God love her, she can be hard work. I also have to very active and lively Westies who need walking as well as going to the hospital every day. I am so tired I could cry. I can't seem to relax and rest up. I just want to clean my house to keep busy to stop worrying about my hubby but by the time I get back from the hospital at night I am fit to drop. My mum insists on banging around in her bedroom as soon as she awakes which is VERY early, which wakes the dogs up. I just really need a hug and some sleep.
I need an MPN hug: Having a really hard time at... - MPN Voice
I need an MPN hug
Sending hugs and thinking of you,how dreadful to cope with so much.Try to keep strong,your little dogs will help,try to look after yourself when you possibly can..Does make you wonder how much can one person deal with,esp as you are unwell too.Really hope hubby soon we'll.Very very best wishes.Sally xxxx
Here is a really big hug for you Killyleagh !
You absoluteoy sound that,although although you don't feel it, you are doing really well. There are many people who are totalky fit and healthy who would be struggling to cope with what you are dealing with right now .
I always read just how much advice and support you give to so many people in our MPN family and I hope that this littke email gives you a little support aswell.
I know you are a strong lady and will get through this- it's just very hard when you feel so tired and worried. I am sure your husband is in good hands and the hospital will keep him as comfortable as possible until they can operate on him and get his problems under control.
A big big hug to you !
Love Dianne xxxxx
Sorry I don't know what Killyleagh is !! Bloomin' predictive texting Strikes again!! I really must switch it off! Xxx
No surprise that you are exhausted, all that worry on top of everything else. Sending big hugs to you and get well wishes to your husband. Mel x
I am so sorry to hear that you are going through all these problems.
I know how difficult it can be. My father suffered a stroke last Feb and passed on 7th Feb this year. I visited him in hospital nearly every day for a year, watched him suffer with 6 bouts of pneumonia till he was not my dad any more. On top of that I was started on Hydroxy, 2 month later a heart attack, 1 month after that Diabetic type 2. I was so stressed out, so tired that sometimes I felt like collapsing where I stood, felt like my world had ended and just wanted to run away a lot of the time.
I am not telling you this for sympathy, what its meant to tell you is, you can and will get through it, I did.
Its a tough journey this life of ours, some have it better some have it worse, but a cuddle ALWAYS seems to make it a bit easier.
So from me to you, a virtual hug from North of the border and a wish that everything goes well for your husband. Also I know that your Forum buddies will keep you from being so over whelmed with things when they can.
Hugs
Anne
Hello Jilly, you are definitely being put through the wringer at the moment, bless you. I hope your husband gets better soon. We are all sending you loads of love and hugs. Maz x x x
Jilly , gosh im not surprised you feel worn out ! when we are put on the spot like this it makes you realise the strength we get to cope , in times like this , Hopefully your hubby will get all the gallstones out and his appendics asap its a worry i know for you , and hopefully you can start to relax and get some much needed sleep all the best Holly 🙏💐x
Even with Brexit pending I send you all my best wishes and an enormous hug from France.
Hope it helps! Bonne journée
Crapaud
From a very sunny Guernsey I am sending you our sunshine with lots of hugs Jilly, as for cleaning the house, if you dust today it will be dusty again tomorrow ....forget it ..... take a breather you deserve it after what you are dealing with, we are all in the same boat one way or another and all cope in different ways, so don't stress yourself out love yourself ,hug yourself and put down that yellow duster . Lots of love coming your way .June
Big hug xx
Hi sending you hugs. Hope you're husband getting well soon. Leave the housework, just try to rest xxx
you have all brought a ray of sunshine into my day. My poor hubby hasn't had anything to eat for 6 days and, believe me, he could ill afford to lose the 10lbs he has lost. His bariatric nurse popped in and expressed her concern about how long he had starved for and said she would arrange the nutritionist up straight away. When she arrived she told my hubby she had no idea where he got the idea from that he should be nil by mouth as she couldn't find it in his records. He told her that he had been told by all the consultants not to eat! He has had an ultrasound scan, a CT scan and now they want an MRI scan as the previous scans don't match each other. I am beginning to think he has been in so long they have forgotten what he came in with. Thanks everyone for the messages of support, you will never know how much they mean to me xxxx
Hi Jilly, so sorry to hear about your Hubby, let's hope he is back on the road to recovery soooooon, my son in law has had gall stones a few times and it is so painful, plus having appendicitis as well poor man must be in Loads of pain.
I am sending you big hugs and hope you can feel the warmth, I really feel for you. It is hard when you are not well yourself, but to have to attended hospital to see him in agony, as well as looking after your mother all to much really.
So chin up we are all here for you with lots of hugs.
Jean x
Hi Jilly, sorry to hear about your husband and the profound effect this is having on you. Stressful times indeed. Wishing you well and a speedy recovery to hubby.
Mary x
Sending loads of E hugs to you. I know how exhausting this is when you are exhausted already. Can someone else either take a turn to visit your hubby or help with your mum. You really do need some help as you will end up worse than you are already. It may seem selfish but you have to start thinking about yourself as you will be no good to your hubby once he's home if you are ill too.
I had my mother in law staying with us and I eventually had to put the foot down and we put our house up for sale and told social work we couldn't take her with us as I was not fit to clean up after her. My GP wrote a letter to back up what I was saying because I was in such a state!! You really should ask for a help. Please don't feel guilty, your mum has been very lucky up until now as the majority of older parents cannot be looked after by their kids. Please ask for help before you end up seriously ill.xxAime xxxxxx😺😺😺
Dear Jilly, my heart goes out to you, as know that overwhelming exhaustion- looking after husband with massive stroke, left hospital, and ambulanced back 3 times, till they found Sepsis and then nursed him day and night for months...I have not got a mother to look after, nor two lively dogs, and just can guess a little re the stress and total exhaustion, not to mention worry, you have been and are experiencing. Do so hope the medics can sort your hubby's gallstones and appendix v soon and that you yourself can get some help and respite. Feel acutely for you and wish all the MPNs could hug and help you...! Very kindest regards and ongoing 'empathy', Tinkerbell13
Hi sending you a hug hope your husband gets better soon try to rest when you can best wishes Poppy 6060
Sorry to read your bad news ,hope your hubby is better soon. Sending you love, and a big hug from Surrey. Please keep us up to date.
Hello Jilly,
I am so very sorry to hear that you are so stressed and exhausted. Sending the biggest of hugs your way.
Is it possible perhaps to ask someone to help with Mum for a few weeks whilst you concentrate on hubby. That is surely enough for you when you are feeling so low. Do you know, none of us like admitting that we need help, but most of our true friends would really like to help if they were asked. Perhaps if you asked you could get some much needed rest and begin to feel a little easier.
I hope that your hubby gets well soon and if you feel that his care is not going as it should, make a visit to the PALS office at the hospital and have a chat with them. They are really helpful and supportive. If you explain the situation they are very supportive. You don't have to complain, just explain the necessity for some understanding in the matter of your husbands treatment and how worried and stressed you are.
It worked for me in a similar situation.
Best wishes for a speedy recovery for your husband.
Hugs,
Marcia
PALS? is that the patient liaison service? I was going to contact someone today as my hubby buzzed for some pain relief at 1 in the morning and was told off by the nurse for buzzing, telling him they were very busy and not to buzz. He then didn't buzz again and went without pain relief all night, even though he was put down for 2 hourly morphine. By the time they finally gave him something he was nearly in tears. He found out yesterday that there wasn't anywhere in his record that he was only allowed water so he has gone 6 days with no food, losing 10lbs he could ill afford to lose. I am tired beyond compare. My sister has offered to have mum but she's in Lincoln and NEVER puts on the heating so her house is freezing and I really don't want to risk a chest infection or cold with mum at her age. I have made the decision not to go visiting tonight. I am going to have a calm day and try and get some energy stored up.
Hey Jilly, Yes that right. I visited Pals and it was a similar situation where my husband had had an operation for cancer and he was in a lot of pain. They did not get his pain medication under control and when I went to Pals things really started moving. I just told them that I realised how busy the nurses were, and I did not want to put in a formal complaint, but I would if my husbands treatment did not improve. Tell them everything and getting it off your chest will help.
I really hope things improve for you soon.
Hugs,
Marcia.
Loads & loads of hugs to you Jilly...
I also look after my 82 yo little grey-haired hobbit, and she really does know how to push my buttons on occasion...
Thank you Jilly, for helping to remind me once again, why we all need each other, from time to time...
I hope your hubby is on the mend again real soon...
Best wishes girl
Steve xooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo
(Sydney)
You gave me a much needed laugh Steve. Thank you for taking the time to get in touch all the way from down under. Good luck with "the hobbit",
Jill
xxx
Big hugs flying your way. So sorry to hear you are having such a bad spell.
Try to stay calm, not easy I know, in your current situation. Do what you can, the rest will wait.
Wishing your husband better.
Lots of love
Karen. 😂🌹
Hi Jilly. So sorry to hear about your husband's illness and the effect on you. I hope and pray that he will recover quickly and that you can get some rest. Sending lots of love and hugs via the magical ether.... xx
Big cyber hugs. Hope your husband recovers soon. You certainly have a lot on your plate right now. I wish I could help in some way other than the positive thoughts for you.
Best wishes, Jan
thanks yet again for all the lovely responses. I haven't spoken to a soul all week except my mum so having you all to talk to has been a lifeline. At least my house is now immaculate lol xx
Hi Jilly. I'm sorry to hear you are having such a hard time. I hope you have some support for yourself at home. You must have so little time for yourself at the moment. Do try to give yourself some treats and nurturing. I hope your husband gets well soon, and life gets a bit calmer. love Mal xx
Sorry about your husband. Your mum sounds like my dad, if you weren't up by 5.30 you had been in bed all day. It is hard looking after an older parent, especially without support from siblings! (been there!) Anyway give your dogs a cuddle, they'll cheer you up. I hope you can get your husbands treatment sorted. All the best for the future.
Lizzie
How about once a week taking a holiday from hospital visits , and arranging respite care to be company for your Mum so that you can just SLEEP and catch up for a day?
Hi Jilly. I'm so sorry you have such a big load to carry all by yourself. Can't you tell your sister to turn on her heat for a week so your Mom can stay there and you can rest? Maybe if you remind her how much you've been doing for your Mom and tell her she has to pitch in and help right now. Great big hug across the Atlantic to you from me in Florida. Katie
So sorry you are having such a bad time. Big hugs sent with love, thoughts and prayers. June Knox
Hello,
I'm new on here, and have just seen your message from last week.
I hope things are going in the right direction for your hubby, and you are feeling much better.
I'd like to send you a big hug too 🤗
Best wishes
Jacqui
Hello my MPN family. My husband is now home, still having twinges of pain. He saw a doctor once in the 8 days he was in hospital. I had to phone the x-ray department and beg them to get his scan done. When he heard how tired I was and how i was looking after my mum as well, he took pity on me and got him in for a scan that afternoon. He was only allowed water for 6 days, a mistake on the nurses side so he has come home over a stone lighter, on my hubby this means all his shoulder blades are sticking out, just horrible. While waiting and waiting for the nurse to get his tablets out of a locked drawer i got a call from the warden of our sheltered scheme to say mum had pulled the emergency cord. I found the nurse and told her we had to hurry because of mum and the look of pure arrogance on her face was shocking. She just didn't care. Mum was found on the floor after falling. Luckily she only had a badly bruised arm but she had been on the floor for all of the time i was waiting with hubby. The number of incidents my hubby went through for the 8 days is both shocking and disgusting. Hubby and the 80 year old man next door couldn't tolerate cereal so when he was finally allowed to eat he asked for toast but the toaster had been broken for 3 weeks. He could smell toast though so when he asked he was told the toaster in the staff room was working but they weren't allowed to use it! Talk about patient care. The old man next door had no use of his hands so every morning he was given a plate of bread with 2 butter packs. He couldn't use his hands to spread it so every morning my husband did it for him. We have already started a formal complaints procedure and i am trying to get a meeting with the ward manager and the worst of the nursing staff to find out why she had such a bad attitude. I became so run down i just kept bursting into tears, had 3 outbreaks of mouth ulcers and am now fighting off a horrible sore throat. My blood is very thin and i am covered in bruises. I am too tired to fight anything at the moment but at least he is home. One thing for sure he will never go back on to that ward. Thanks so much for the support xxx
Oh Jilly, what a horrible experience for you! I hope you can all now huddle down at home and build up some health and energy.
Very best wishes
Judy x
Essential Thrombosis - CARL Mutation Positive
Lesley aka Sand Dancer 💃🏻 
