Off meds AGAIN.....

tkachev · 13. Apr 2011, 11:59

Well I am off most meds (still taking sulfasalazine and iron tabs) due to another chest infection. But yet again I am starting to get overwhelming fatigue. This happened last time I was off meds.
Lots of AC users say they get fatigue from the medication but for me it seems to be not taking the meds.
I think the rheummy Nurse is going to send me a chest x-ray appointment if my consultant thought it necessary. But she did not say what to do if no appointment arrived and when to start on the meds again. If I restart next Wednesday (Humira) then it could get worse if the infection is still hanging around.Due to holidays i have not yet got to docs for anti biotics.

Elizabeth

elnafinn · 13. Apr 2011, 12:19

Aw, dear Elizabeth, that is such bad news. :sad: You really should have this chest xray fairly soon. This has all been going on since early new year hasn't it? I am so very sorry to hear that you have to come off the meds yet again. You had such a lovely weekend away and now this. I wish I could do something to help and all I can do is send love and hugs to you

Elna x

tillytop · 13. Apr 2011, 14:07

Hello Elizabeth - I am so sorry you have yet another infection and have had to stop the Humira. From my own experience, I suspect that the fatigue is due to RA itself, perhaps taking advantage of the lack of meds.

Hope you can get to docs for the antibiotics soon, to try to get shot of the infection. I reckon if you don't hear back about the chest x-ray you will need to follow up cos, as you say, you don't want to be back on the Humira until the infection has well and truly gone.

Thinking of you.

Love Tilly xxx

skezier · 13. Apr 2011, 22:47

Hi Elizabeth,

I am sorry its come back for you flower and hope it will soon be under control and leave you be so you can have your meds again.

Leaving you a ((((( ))))) and a wish it would all sort out for you. Cris xx

julie47 · 14. Apr 2011, 03:08

Hi Elizabeth

Sorry that you have had to stop the meds because of a chest infection, and I do hope you get to the doctors asap. I also think perhaps you should chase up the chest xray too. When ever I have a chest infection it really does knock you for 6 with tiredness. I hope when you get the antibiotics they make you feel better.
Take care
Juliepf x

tkachev · 14. Apr 2011, 06:11

Yes I now intend to phone to ask if I should start Humira on Wednesday. I will have missed 2 lots of MTX by then and had a 3 week gap for Humira.

Things are difficult at home as nobody takes me seriously. I have just read the riot act to the children to tidy up , stop chucking their rubbish about on the floor and help a bit (although Lucy made me tea and toast this morning).

OH has no idea how I feel, he thinks it is all a joke. Have told him I DO NOT want the whirlwind children round on SAt(he will ignore me as usual). He wants to go out on Sunday so I will be alone coping with everything but if whirlwind children come on Sat I will be too ill to cope next day.
I am feeling so fed up with lack of care, understanding and help.....
Elizabeth

Poppyg1rl · 14. Apr 2011, 08:30

Hi Elizabeth,
You poor thing, you sound so low and fed up :sad: I totally understand re the messy children ditto! I'm issuing 'fines' to mine, tidy up your mess or lose pocket money :P they know I'm not kidding as well

Did nurse brown send the chest X-ray form through? Think that needs looking into.
If I could pop round to help i would, but with the wrist back to square one again i would be more of a hindrance than a help :roll: lovely that Lucy made you tea and toast though, it's little acts of kindness that make the day seem bit brighter.
Can you take to your bed Saturday? That way OH will have to get on with it, if he wants people over he'll have to deal with it.
Thinking of you and sending hugs (((()))) xxx

tkachev · 14. Apr 2011, 09:24

Unfortunately no way can I go to bed, maybe at tea time. OH has gone to rest as usual leaving me to it all. I complained about all his mess in the front room so he had to bring me down complaining of burnt onions after i have spent the best part of past hour cooking spag bol! He'll be quite happy to eat it (and no the onions were not burnt).
I feel like tipping it over his head!
Elizabeth

seamonkey · 14. Apr 2011, 09:25

Hi Elizabeth,
Im so sorry your having such problems with your health and at home. I do sympathies ive given up with house work etc now when im too tired etc it just doesnt get done. No body else sees that it needs doing, so they dont bother doing it! My oH got up early with me this am when i was waking kids up i thought yea he going to lend a hand to get the 4 of them off to school, packed lunches done etc but no, he got hisself ready and headed off early. No reason just did.
If i could come and give you a hand i certainly would. I hope you get to rest on sat so you can manage sunday when your OH is off out. I also hope your infection clears up and you manage to go back to taking the meds you need. No body i think knows what its like unless they have the same health problems which impact on their own lives. For just one day i would like my lot to be in my shoes. Just to sample what its like.
Please rest when you can, not easy i know.
Go on tip it over him ( when its cooled!)

Hoping your well soon,
seamonkey

tkachev · 14. Apr 2011, 11:25

Hi Seamonkey,

You know what it is like. Actually my 7 year old daughter has just helped me tidy garden, I have been pruning stuff over the past 6 weeks but had to leave it by front door as couldn't dispose of it as garden bag was trapped under a heavy pot. i have asked and asked OH to do it but today have given in and we did it between us. Had to go and find a new bag though.
The spag bol went down very well- he is just being nasty cos I am complaining a lot as he is using part of our lounge as a garage. He has a garage but it is filled to the brim with his stuff. I have had to put up with it since mid January. I am fed up.
Bet everyone a tenner that whirlwind kids will turn up on Sat because he just doesn't care how I feel......

E x

ironic · 14. Apr 2011, 11:46

Oh Elizabeth no wonder you are feeling down. This infection has gone far too long and to top it off everything is happening at once for you.
I wish I could say something to ease things for you.
Hugs anyway,
Lv, Ix

frogmorton · 15. Apr 2011, 03:33

Elizabeth

you poor girl :sad:

you so do NOt deserve all this. I am sorry the OH is being insensitive and a bit thoughtless at the moment.....you dont sound as though you think he either listens or cares.

Only got one thing to say which might help you a wee bit.....my girls are growing up now.....l can do less....the house is often full of kids (a lot not mine :shock: )...l still feel l pick up after them, but like your Lucy they ARE developing a caring side and THEY are trying to be less selfish.

It's horrible feeling like you are moaning all the time

(((((((((())))))))

for you and hope that you are not worn out on saturday, that teh chest infection clears quickly and a miracle happens and the garage is emptied :roll:

Love

Toni xx

tkachev · 15. Apr 2011, 05:46

I think they think, like a lot of men, if they ignore what we say it will go away. But I am getting angry now at being ignored. I am babysitting the children so he can go and have some fun on Sunday but I will not be able to manage if I have to run after whirlwind children. If their dad took notice it would be okay but he goes off into the garden to smoke and chat for hours so all the chasing and controlling has to be done by me.
The mess in the lounge is upsetting too. We have a lovely through lounge with a wooden floor but half is full up with his junk.He has a garage and 2 sheds for all that stuff.

Elizabeth

elnafinn · 15. Apr 2011, 06:07

Aw Elizabeth,

I just do not know what to suggest - I know you have to put up with so much and feeling so unwell too. I also know that you feel better in yourself if things in the home are in order - you are the same as me in that respect. So if those things are sliding it does not help you one bit either. You will just be struggling all the time to try and catch up like I know you do. For a long now it is just the two of us at home so that makes life much easier but you have the children and children are demanding, bless them and you are not well. You are trying to do far too much which will not help you at all especially without the meds - it is a vicious circle.

Would OH chat to me if I met him in the garden when he is having a ciggie? Something has to change but I am not quite sure how that is going to be done.

My thoughts are with you, Elizabeth, at least you can call in here and get rid of some the anger that you quite rightly are feeling.

Love and gentle hugs
Elna x

elnafinn · 15. Apr 2011, 06:27

Dear Elizabeth,

How heartwarming is that, it brings tears to my eyes, your daughter helping you, bringing you breakfast and helping you in the garden. It is obvious that Lucy feels so much happier in herself now and wants to help you as she loves you so much and it is her way of saying thank you - I am sure that although she is only 7 she understands more than OH how you are feeling as she knows only too well how she has felt with her problems.

Love
Elna x

Poppyg1rl · 15. Apr 2011, 06:59

Hi Elizabeth,
I'm so sorry things are so difficult for you, it's bad enough coping with Arthur AND a chest infection AND children, nevermind housework, cooking, gardening etc. I agree men do tend to switch off when the 'nagging' begins, it's far easier to ignore us and do what they want.
Is there a good friend that you can talk to? Would they be able to have a word with him? Something needs to be said, you are getting (rightly) resentful and he is ignoring your needs.
You can talk to us always and it does help to vent sometimes, I'd be lost without my best friend, but then she has her own problems, and with the 2nd anniversary of her daughters death coming up I don't want her to worry about me, so coming on here has been...well words fail me, I've made so many friends who are so sympathetic and understanding, including you Elizabeth

you've helped me immensely since starting Humira, if I can help you in anyway feel free to pm me, even just to talk, ive been told I'm a good listener

Xxx hugs xxx

frogmorton · 15. Apr 2011, 08:42

Hi Elizabeth

l do hope things turn out better than you expect....if l were you l'd send his children into the garden with him! He can still have his **** and watch them while he is chatting. By the heck you need that trampoline dont you?

As a couple have sdaid plase dont forget us we are here and you can moan to us and we wont ignore you or let it go over our heads....

Love and hugs

Toni xx

tkachev · 15. Apr 2011, 09:43

Sorry folks I am being a misery. I have taken a deep breath now. Thanks for the lovely messages.
They do go in the garden but love to run indoors too. They have been told not to go upstairs but I am the only one enforcing it. Last time little girl was about to run up stairs with mud covered feet and I had to get her to put her socks on to stop treading it through the house.

Elizabeth

julie47 · 15. Apr 2011, 10:21

Oh Elizabeth, I think I want to scream for you arrrrrrrrrghhhhh :shock:
Sorry but after reading this thread I feel so cross at your OH.
I am setting off on my mob scooter and I am gonna take you out for a spin

and a bit of retail therapy.

It was lovely of lucy to help with the garden and bless her for bringing you a cuppa too.

I do hope that saturday is ok and that you are ok for sunday.
Hope the chest infection is much better too

Sending you big hugs ((((((((((((((()))))))))))) and will be thinking of you at the weekend
Love Juliepf x

tkachev · 15. Apr 2011, 12:53

I have forgotten all about the chest so I think is much better so that is good news.
Thanks Julie, I did a bit of retail therapy online but also been eating loads of biccys.

Elizabeth

elnafinn · 15. Apr 2011, 13:31

Dear Elizabeth

Now that you have done some retail therapy on line and eaten the biccys perhaps you can casually mention to OH that you have arranged for an ironer, cleaner, (from a top class agency) and a child minder (just for an hour or so to give you a break), to all start on Sunday morning, when he is out on a jolly.

I do hope your weekend goes ok, keep in touch, my lovely,

Love
Elna x

speedalong · 15. Apr 2011, 13:35

Oh Elizabeth what a nightmare. Get OH to look after kids and go to out of hours GP service/Badger/NHS walk in - the quicker you get antibiotics the quicker you can get back on the arther meds. Talk about **** timing!!

Speedy

only49 · 16. Apr 2011, 07:01

tkachev wrote:

Unfortunately no way can I go to bed, maybe at tea time. OH has gone to rest as usual leaving me to it all. I complained about all his mess in the front room so he had to bring me down complaining of burnt onions after i have spent the best part of past hour cooking spag bol! He'll be quite happy to eat it (and no the onions were not burnt).
I feel like tipping it over his head!
Elizabeth

oh elizabeth poor you, yeah i think that would be a good idea, let him wear them if he dont like eating them, reminds me of a story of my late mum-law, her husband was late in for his tea one night and she had kept it warm for him, anyway when he did come home, she flung his tea at him and said you can get on with it, your tea ruined, she was quite mad at him, and she said and dont think i clearing up the mess either,

tkachev · 16. Apr 2011, 12:20

He had seconds so can't have been that bad.
My chest is better so I will take my Humira on Wednesday. If it starts to get horrible again then I will know I will need to keep off meds until sorted.

OH very kindly phoned to put off whirlwind kids! I think he knew he had to keep me sweet for day out on Sunday.

Elna i have tried employing somebody to do my ironing and it didn't work out(remember she was always texting in paid time) and nobody does a good enough job in my opinion.

Things have been better today!

Elizabeth

tkachev · 17. Apr 2011, 09:15

elnafinn wrote:

Dear Elizabeth,

How heartwarming is that, it brings tears to my eyes, your daughter helping you, bringing you breakfast and helping you in the garden. It is obvious that Lucy feels so much happier in herself now and wants to help you as she loves you so much and it is her way of saying thank you - I am sure that although she is only 7 she understands more than OH how you are feeling as she knows only too well how she has felt with her problems.

Love
Elna x

Sorry I didn't reply sooner to your lovely message Elna. I haven't been thinking straight really.I took the opportunity to sit in the sunshine yesterday and about to go out again for a few moments of warmth and quiet. You are right she is a gem but i think being female is why she is so lovely!

Elizabeth

tkachev · 17. Apr 2011, 09:19

speedalong wrote:

Oh Elizabeth what a nightmare. Get OH to look after kids and go to out of hours GP service/Badger/NHS walk in - the quicker you get antibiotics the quicker you can get back on the arther meds. Talk about **** timing!!

Speedy

I am def going to ring rheummy nurse because i need to know what to do next! An x-ray appointment may never arrive and valuable time will have ben lost. Chest is better now but it keeps coming back when I take my MTX and Humira.
Hope you are feeling the benefits of your hip now.

E x

Off meds AGAIN.....

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