one of those lifetimes

[dianesistern]

Hi everyone need to talk on here as there is no one i can talk to at home, i am having a really tough time i have just come out of hospital on ivs and while i was in there my partner really didnt seem to care the day i was due to come home he went fishing all day never bothered to ring then went off to play crib,despite knowing i woud lbe dissapointed at not coming home, i was allowed to come home the next day in the evening and he went fishing again, i really needed some support doing the ivs but when he came home he said he didnt feel well and went to bed, this would all be difficult enough if i had not come home to a very poorly dog who may have to be put to sleep on monday (he left me with the chore of taking her to the vets on my first day home) she has been a wonderful dog and i dont know what im going to do without her, also my heavily pregnant daughter of 16 has just split with her boyfriend and the baby is due in 6 wks so she is upset and crying and i dont know how to cope with it all, to top it off my partner has just got up and decided he needs to be somewhere and gone off again. is it me or are things badly wrong. Diane

[john]

me again diane,
i just got to this post having replied to the other.
my goodness, you are really having a hard time at the moment, and there's not a lot that i can say that will help.
so often our spouses, partners and families just don't want to understand how our illnesses affect us and that we need their support. it's not just you, constant, supportive care at home is really quite rare, judging by what people tell me. problem with our illnesses is that we don't look ill unless we have an infection, then we get better again with the antibiotics and it's as though we are cured!
how many times do people tell us that we look so well, and how does that make us feel when inside we are feeling like crap?
we don't choose the people we live with because they look like they will care for us when we're sick, so i guess we have to be a bit understanding when they behave badly.
your daughter has made her own choices, i bet she didn't ask for your advice when she took up with her boyfriend or became pregnant, and whilst you can be there for her you can't solve her problems.
you main problem is getting well yourself.
reading this again i don't know if i've expressed myself clearly,but i hope you can see i'm really sorry for your situation.
take care - john

[emsy]

Oh no Diane I really feel for you. I dont know what to add to what John has already said apart from that i second what he has said. I hope your dog is OK, i am dreading the day I have to go through this with my 14 year old dog but i know the day will come. Here is a virtual hug ((())) (think thats how its done!)

emsy x

[dianesistern]

Thank you for your support and help things are looking a little better Lizzie made it through her op but they have found a lump now and think it is cancer so my poor gitl not through it yet, my daughter has sort of patched things up with her boyfriend and after telling my partner how i feel he has said he will try harde, i am getting on ok with the ivs and now awaiting a newtreatment for my low platelets and then an endoscopy so hopefully things are getting better Diane

[john]

apart from lizzie's future, i am glad things are sort of getting better for you diane.
long may that continue!
take care - john

[susand]

Hi Diane,
I have only seen your post today. I'm so pleased that things have lightened up a little for you. I felt for you as I read your post and I suspect that many of us have passed through similar experiences, especially from those who love us most.
It's difficult to find words to console us when we feel most alone, but I guess knowing that we are not alone is something to hang onto. For myself I find that accepting how I feel, in all its levels, helps me struggle through and know that nothing stays the same from one day to the next.
Fingers crossed that you keep infection free and recover your strength as soon as possible.

Sue (susand)

[beckag87]

Hi Diane,

My last boyfriend of 2 years was with me for a year before I was diagnosed. I was in and out of hospital and he begrudgingly came to visit me in the evenings after work when he wasn't going to the gym, going to the pub to see friends or when there was something he wanted to watch on TV. I loved him to bits and it broke my heart that he wasn't more supportive. After being diagnosed with CVID, he was a bit better but never wanted to help with anything - my friends would offer to take me to hospital/appointments but he was always too busy.

It became so much hard work to get him to support me and he became less and less interested. The only time we seemed to spend with each other was drinks/group meals with his friends (he didnt like mine) and he didn't consider that after a long day at work and then going out that I'd be exhausted by midnight and would want to go home.

Eventually he sat me down and said that he couldn't cope with me - that I was always ill and it was too much to bear (he'd never help with food/tea/meds etc). He said that it was embarassing when he had to explain to friends and colleagues how I was when they asked. I loved him more than anything but he wasn't the one for me obviously.

I'm not really sure what my point is but I am now realising that its my friends who have got me through. It must be very difficult for partners as they are there 24/7, day in day out but often get used to you being ill - its normalised.

I hope that he understands what you are going through. This CVID/PID malarkey is not easy. Your daughter will find her feet - teenagers are so resilient. I'm glad she's patched it up with her boyfriend but the most important thing is that she has a loving and caring mother and family. She will be fine and and you never know, becoming a grandma may give you a big boost.

Please let us know how you are getting on! Best if luck, Becks x

[liz2mac]

Hi Diane,
I, like the others, replied to your first post and then found this one. Oh love, I don't know what to say apart from that, though we've never met, I care about how bad things are for you. My first husband couldn't cope with my illness and I know that is fairly common. Sometimes having CVID is rubbish and everything just feels too much. When we're feeling so physically unwell it makes us unable to cope with the emotional stuff as well, but sadly it keeps on coming at us nonetheless. As a Granny, I can truly understand how worrying the situation with your daughter is. It's a concern when our daughters are due to give birth in the best of circumstances. However, please try to hang on to the joy that your new grand child is going to give you. There are times when my little ones are THE reason for me to keep going. It's so difficult for us to truly get support for the stuff we live with because of cvid, since it is all so hidden. I guess that the only ones who can really understand are others like us? So thank you yet again Sam, for setting up this forum. I don't know how we'd all cope if we didn't have it.
Liz

[bubblemum]

Hi Diane
Sometimes life is so hard when it throws not just one difficult situation at us but several all at once. Hard when people say to you to keep strong and what a fantastic job you are doing when all you want to do is scream back "I don't want to keep strong, I don't want to know things will get better, I just want things to be ok for once" yes I have been there many times.

When I had a car accident earlier in the year my husband went into automatic policeman mode as his way of coping with seeing someone he loved dearly in pain. It involved grabbing the insurance documents before he left the house, saying hello to me at the scene and then taking photos whilst chatting to the attending officer and fire crews. I was deeply hurt at the time but now understand that it was his way of coping.

I don't have a sixteen year old daughter but can remember what I was like at that age - all those hormones swimming around and I didn't have the added complication of pregnancy! I do hope things work out well there, it will all be a bit of a roller-coaster for you and her at the moment but just wait to get that little babe in your arms.

Finally and honestly I will say even though I wanted to shove this back in people's faces when they said it to me "it will get better"

Take care
Rachel

[dianesistern]

Thank you all so much for your posts and support life is a bit of a roller coaster still, but hopefully light the end of the ride, my consultant at papworth has requested that my GP refer me to a clinical psychologist to help with the stress and depression so fingers crossed this helps x Diane

[liz2mac]

Hi Diane,
I'm so glad that you've been referred to a clinical psychologist. We all have so much to cope with that we need every bit of sensible help that we can get. I my personal experience, clinical psychologists are interested in our particular disease and the way in which it impacts our day to day lives. It's like everything though, so much depends on how you get on with each other as people, so I do hope that you find who ever you see approachable. I'm sure you will. Will you let us know? I'd love to have a clinical pyschologist on UKPIPS' medical advisory panel as the psychlogical impact of PAD & other PID's on both our lives and the lives of those around us is little understood or researched into.
When's the Grand child due? I've just had a Grandson top up as he and Mum came to lunch and hauled me away from my computer screen. Lovely. He's just one and getting to that pickle, into everything stage. Must go, the dogs are REALLY making their wishes known. Off to the river for a walk.
Liz

[dianesistern]

Hi Liz to be honest things have gone from bad to worse have been on iv antibiotics was in papworth a week and on them at home for a week but the final straw was a phone call from my bank to say there was some unusual activity on my account and it has become apparent that my so called loving partner has been stealing money from my accounts for the last year amounting to about £17,000 what is really hurtful is that most of it took place while i was in hospital and incapacitated at home, he also stole from my social worker, personal budget fund which is supposed to help me with things due to my ill health, he has left me in a huge muddle financially with lots of debt and bills to pay and ime falling apart, it has become a police matter and he was arrested and bailed until 10th Dec and is also being charged with assault, so dont things can get any worse, sorry for this tale of woe but ime really struggling now. Diane

[liz2mac]

Oh Diane,

I don't know what to say. I'm so sorry that this awful thing has happened to you on top of everything else you are dealing with. Sometimes life just seems impossible. Are you getting any help and advice about this from the police or the courts? Have you contacted your local citizens advice bureau? I have found them helpful in the past. I know the anxiety that money worries bring and it must seem like the last straw.
I wish I could help, but am thinking about you.

LIz

[john]

diane,
i'm deeply sorry to read this and hope that things will soon get better in all respects.
what a horrible thing to do to someone who trusts you. if there is any justice he will get his just come uppance, but that probably won't make you feel any better for having to bear his abuse.
chin up m'dear
john

[mali42]

Hi Diane
What a rotten thing for someone to do that to you, i hope things improve for you soon.
My daughter went out with some dodgy using characters but thankfully she has found a good one who will look after her so there is hope,
Malcolm