Hi everyone, is it me or are down days normal to us with these conditions.
I have to admit that I am finding it difficult to cope. Financially, as I can no longer do my job, in my home because I cant keep up with the housework. My home is not clean and tidy...l like a clean home. I can't or won't invite anyone round because this is not me it was much worse when I was working
I am feeling isolated as well because I can't go out quite as much as I used to and since this illness started 7 years ago a lot of my family and friends seem to want nothing to do with me...
Ask family I hear you say, they won't help...I am so stressed this week because on Friday, I have an Inspector from landlord coming round. I have found a huge damp area beside the fireplace in the living room. It goes right through to the kitchen. Its also on the other side of the living room. However, he wants to check the whole house for damo, so this is why I have had to get things done; but plumber, who was sent round first, said that he thought it was rising damp...anyway the stress of having to tidy up every room, plus I had to decorate one it was in such a state, has started my asthma off, I have a sore hip, I ache from head to foot and yesterday I fell over twice because my blood pressure was raised.
All of this by myself. My partner of 3 years just sat on my sofa for the past 3 days while I struggled with the bedroom I had to decorate...but wait a moment he has a sore knee all of a sudden. Good job we each have our own places.
Sorry for the rant, I just don't know what to do anymore. Theres the mess up with medication, and I am also worried about the fact that consultant took me off mycophenolate until I see him on 30th.
So much going on and no help really...I will be ok when everything is done and they finally find a medication that works for me without any issues.
Sorry for rant..take care all of you xx
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Alley27
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It is terrible having to do things when you don’t feel well enough and especially when your partner doesn’t help. Is he really so wonderful that you want to keep him - sorry none of my business!
Is The inspector registered? Have no idea how these things work but you might like to check with the council. Anyway if you have used the property as usual then any problems with damp are up to the owner to sort out. Just make sure he finds you another suitable place or refunds you everything. I know it isn’t ideal. If you need to then get advice from a housing specialist or even phone Shelter in London. They might be able to let you know your rights.
Your appointment is only a few days away now and let’s hope the specialist gives you the right medication.
Sending you lots and lots of love
Isabelle
Hi
I'm so sorry you are having such a rough time.
Like Isabelle said is your partner really so special, he should be helping you . Could you show your family this forum, it might give them a wake up call. Love and hugs Lynne xxxx
Hi guys and thank you for your replies...you know what, I have been thinking about our relationship for some time now. He asked me if I would marry him in May next year...
Initially I said yes provided that my health is up to it. However, thing's have changed, especially over this past year.
When we first started seeing each other, I told him about my illness and he said that we would face whatever difficulties we come across, as they arise. 3 years ago I was really well, I had a brilliant and in some cases privileged job . I started getting worse November last year. I am 7 years in with AIH PBC overlap.
It seems since I have become worse with the three darling autoimmune conditions I have, yes hashimoto's too...he is different.
As for the inspector, he's from my landlord which is Wdh, I already checked with them and he is genuine...just wish I didn't have to rush to tidy round but I have been unable to do anything for the last 6 months because of the medication, mycophenolate.
I am so worried about what is happening to me at the moment, even had swelling in the brain a couple of weeks back. I have had 8 flares in the last year, and the last medication they tried me on which was mycophenolate was awful, I couldn't function properly.
I am not on any medication at the moment except budesonide as consultant took me off it because of problems. I am actually scared at the moment because I am running out of choices.
I tried aza, it put me on hospital for 3 weeks. Then mercaptopurin, for almost 7 years with not too many problems except, that I had started flaring, then the horrible mycophenolate...not sure what is next but, I am going to try I need to be as well as possible.
As for my fella, is it wiser for me to say we will stay as we are....or should I marry him....a question that I am considering at the moment. I don't want a carer if you get what I mean plus I can't be a wife that can wait on him hand and foot.
I hope he doesn't expect you to be at wait on him hand and foot!! The way you feel, it should be him waiting on you. I would seriously think about your wedding and whether you really want to spend the rest of your life with. Sorry, I hope you don't think I'm being rude , just worried about you. Pm me if you want to. Love and hugs Lynne xxxx
• in reply to
Pains me to say there's none better qualified to be the forum Agony Aunt xxxx 🙄
So it sounds like it was easy for him to be supportive when you were quite well but now you need his help he has a sore knee. Well that isn’t how it works, I am not making myself to be anything special but the day after ai came out of hospital having had major surgery I was getting my husband help and into hospital and I have been caring for him everyday since as a lot of partners do. Do you really need someone like that in your life when you have so much to deal with? Sorry for being blunt, take care xxx
You have to be cruel to be kind sometimes! But to be honest I don’t even think what you said is cruel, bs, it needs saying. Others have said the same. My wife has gone through hell looking after me for years, and still doing so. Can’t imagine what would have happened if she had lounged about on a sofa. Well I can guess......
Sorry you are going through this difficult time. I have been alone now for 17 years. I was diagnosed four years ago with PBC. I have often thought, how much better off I am, being by myself. The man in my life would not be helpful during these times. I get to do what I want when I want. I don’t have to answer to anyone. If I’m having a bad day and I need to lay around all day it’s OK. When I’m having a better day, I know there’s things that have to be done, and no one else to
We are sorry to read how down you feel, it can be very overwhealming.
Can you possibly see your GP and discuss this with them? they would be best placed to asess what support and guidance you need.
Hi guys and thank you for your replies they have actually cheered me up lol. Had a long think last night and I have decided that I am not going to marry him, nor am I going to let him move in. He has a lot of improving to do before anything like that happens.
I told him from the begining, that I have 3 autoimmune diseases,that they are progressive and incurable, and I have bad and good days. I have tried to educate him about them. He saw ne at my worst last November in hospital, or at least he thought it was my worst. I think that he realizes now that I am getting worse and I don't think he fully expected his girlfriend to get to the point she can't function due to horrible medication..
Spent today alone with my pooch and despite me cleaning up, I have had a good day. I don't feel any of you have been rude...in fact you have only said what I am thinking lolx
I admit that I am struggling with everything, but I am still breathing.
I am alive...
Christmas this year for me will be difficult but I am looking forward to cooking dinner with the help of my son. He's actually at home for Christmas, which is brilliant lolx. He gave me a new nickname yesterday because he heard from his brother, that I had fallen over twice whilst decorating his room...he called me little miss weeble lol. Both my son's work away.
On Saturday I get to see the consultant and hopefully he will have answer for me. I certainly have a lot of questions and I am going to write them down. I am not leaving until I have the answers that I need.
I agree about the advice you've been given. When it comes down to dealing with sickness, that's when people show their true character. Your boyfriend may not be the nurturing type. But you were being way too passive, letting him lie about while you struggled. I think it would have been perfectly appropriate for you to speak up, telling him to either pitch in or go home! It is my experience that partners are sometimes unclear about what is really wanted or needed or useful. Don't ask him to be a mind reader. If you're confident that you have been crystal clear, then you can go forward with the knowledge that you have been very forthright and he just wasn't up to the task. HTH. x
Hi Allie
I've read through each of the above messages from you and from my lovely friends on this forum!
I'm so glad to read that you've decided not to get married to your partner until he's improved? What do you mean by improved? I'm sorry to be so blunt but a leopard never changes it spots so you could be carrying a rod for your back if you do get married in the future.
I was so angry when your feeling so poorly that your partner just sat on his butt on the sofa with his poorly knee whilst you've been trying to find the energy to decorate and tidy up all alone which in my books is a blummin No! No! In my eye's you deserve a 🎖 for just finding the strength to deal with it all!,
Allie I'm here for you too like many others and Lynne so please never feel alone! PM anytime
Finally please think deeply about your future and go and have a chat with your GP about everything and my fingers are crossed that all goes ok with the landlord inspector visit.
I didnt put Lynne into the other category because I wanted Allie to know she's special in many ways! I'm not saying others aren't special too, but to me Lynne is a great listener in many ways and likes to receive PM's and enjoys helping others in so many ways! She's an amazing lady to be hold! ❤
My grammar has never been my strongest point but I do excel in many other areas infact, so less of the naughty lad side of things by highlighting my flaw, no one is perfect including Slaines ..😁
• in reply to
Thank you. That is so kind of you to say so. You too are a lovely, caring lady. Love and hugs Lynne xxxx
Thank you so much guys. Today has been a better day. I decided to stop the cleaning and wait for my house elf to come back off holiday...house is getting there slowly, and do what if it ain't perfect.
For goodness sake, my job meant that I worked away from home barely had time to wash clothing and uniforms, then back out again. I travelled, worked and spent 9 months of the year in London. So yeah its expected my home here in Yorkshire, would be untidy.
I am just going to do a little bit each day when I have the energy...if no energy then I will rest.
On Saturday I go see the consultant and hopefully he has an explanation for what is going on. Today from around 7pm I can feel my abdomen swelling and my head feels off again. Took some lactulose...have no idea why but it seems to help. I do have trouble going to the loo for at least the last 6 months.
16.5 on fibroscan whatever that means I need to know. They never discussed this with me. I have been a model patient but from now on I am going to be quite a deva and ask exactly what I want to know.
Christmas cards...is it that time of year...I blame the brain fog...not even bought any yet ...I don't fo Christmas really lolx
I will keep you all posted and thank you everyone for your posts they have really helped. On another note, my partner had to go for an xray on his bad knee today, he's got to have a replacement done but I can assure you all that I will not ge doing anything to help him except possibly feed him lolx
Firstly good luck with your consultants appointment this coming Saturday and my fingers will be crossed that everything goes well! My only recommendation would be to write yourself a list of all your symptoms and questions to take with you, also don't forget your pen to tick each question off as we've all be there when 5 minutes after walking from consultants room you realise you forgotten to ask one of the most important questions , you know what I mean!
You mentioned that you live in Yorkshire, I did too until 2.5 years ago and was registered under Hull Royal and Castle Hill Hospitals! My job also took me to London and Scotland alot so I can relate
to how stressful it all can become for you so please take care of yourself, your number 1 in this picture.
With regards to your christmas card comment, I would put this as the bottom of your priority list or don't add it all as I think you have more important things to consider, number 1 again is 'YOU'
I cannot comment on your fibroscan result of 16.5 but I'm sure your consultant will explain everything in detail when you see him/her on Saturday, however I do suggest you add this as a question to your list as sometimes brain fog can kick in when you don't expect it. Oh take pee sample with you just incase the nurse asks for one as it's better to be prepared !
Sometimes it's best to take someone with you for support but if your anything like me 'stubborn to the core on this point' I like to go alone with my little tick list as it's the way I cope with things. My comment maybe frowned upon but this is why I am!
My prayers are with you that you get to the bottom of all health issues so that you can focus on getting well again!
Sorry to read about your partners knee and do hope there's not a long waiting list for his replacement.
Please take care of yourself Alley and in the meantime remember we're all here to listen and advise when possible. PM me anytime.
Commiserations with all that travelling you used to have to do. So yes every excuse for your house being untidy 👍.
Hope you have a good rest - well as much as you can - and you know what about that person you call your partner - it’s absolutely nothing to do with me but....
Apologies for sticking my nose in 👎.
PS I love seeing all the different ways your tag is spelt on here. It’s great entertainment value. 🙂. There used to be a thread where you put down the rationale for your name tag - that was great fun reading! Now Alley, what could that be about??
Good luck as per 👍
Miles
Well, I think Trish has said it all but I do want to wish you the very best if luck on Saturday, please let me know how it goes. Pm me if you want to. Love and hugs Lynne xxxx
Where are you in Yorkshire?
I'm the other side of the Pennines in Castleton Rochdale. My son's girlfriend lives in Bingley. Love and hugs Lynne xxxx
Sorry you are going through this difficult time. I have been alone now for 17 years. I was diagnosed four years ago with PBC. I have often thought, how much better off I am, being by myself. The man in my life would not be helpful during these times. I get to do what I want when I want. I don’t have to answer to anyone. If I’m having a bad day and I need to lay around all day it’s OK. When I’m having a better day, I know there’s things that have to be done, and no one else to depends on but myself. Im alone but have never felt lonely. I just wanted to give you my perspective. Sending you big hugs for strength and hope that you feel better soon.
Hi Lorraine I was diagnosed in 2012 with AIH PBC overlap and I inclined to agree with you hun on the being alone with no one to answer to.
It has been a difficult 12 months for me but I am determined to fight and live...I will look into the rituximab infusion because I am very unsure of it.
Today it was nice to see the hepatolagist and hear that hes pleased with my liver and you know what, as soon as they sort my head problem and high blood pressure out, I think I will be fine.
Ony bad days I have decided that if I need to rest, then I will.
Hi everyone, I have been to see consultant and hes pleased with my numbers. He hasn't put me on any other medications as yet. I have to stay on budesonide and at my next appointment discuss rituximab infusion.
He agrees there is a serious matter to be addressed with my blood pressure and my head. I have had this damn headache and drunk feeling for 6 months now. My blood pressure was really high. He wants me to see a neurologist and a ct scan on my head, and at the same time he wants them to look at my liver.
I didn't discuss portal vein with him but I am going to ring secretary and ask her if she could just mention this to him for me.
I am concerned about my blood pressure and my head and need it sorted. Leaving blood pressure too long is dangerous
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