having a low day

cthornley

I have been having a bit of a tough time recently
Today I had an appointment with my Rhemy she was great but I left her and whilst waiting "to threaten my RA with steroids one last time" (her words not mine), I just burst into tears.
I think i've just had enough of everything, I want everything to just stop hurting, I'm sick of being sick.
My Rheumy has reduced my MTX back down to 20mg as I was getting sickness with 25 and she doesn't want to put me off what is otherwise a good drug for me, which is sensible. However I am struggling with the everyday again, as I told her i'm not getting any major flares just continual small ones and a general feeling of being completely worn out, I'm back to not sleeping at night due to pain and the fatigue is unbearable.
She told me that she would recommend that I consider TNF as she thinks that I would be eligible for this and its really the next step - for some reason this was the straw that broke the camels back.

I still think i can get back to where I was with MTX before I came off it to have my son but she said that thats what I said last time I saw her and that she said that she would push for me to reconsider in the next few months if things don't improve.

The thing is I think my RA is made considerably worse by stress and I'm really stressed at the moment with work and home - construction industry in a recession is a rubbish place to be and i'm currently pretty much functioning as a single parent to an active toddler which woud be hard work without RA :shock:

So the upshot is I have till post Xmas to decide what i'm going to do, i don't want to be ungrateful for my Rhemy's efforts to help me but I just want to take a view on my meds that looks at my whole life and not just the RA symptoms - TNF just seems a big step for me.

I think I need to try and sort my life out a bit which would help with my RA, before I go down any further more serious treatment routes but I just don't know how to start

It doesn't help that nearly everybody I know seems to think I cope so well, that i don't show my pain or stress - I'm not, I just have to keep going for my son and because i don't have a choice

Its really getting me down
Chrissie

joyful164

Hello Chrissie.

You really do have a lot bubbling up around you at the moment.
You are obviously having a lot to take in, what with work and looking after your young toddler, both things that would make me tired just to start with. I felt fatigued just reading your story. You don't say whether you have any family who are able to help you lighten the load so to speak. Just give you a bit of time to investigate and think about the options given by your rheumy, who is only there to help you. Have you spoken to anyone on the helpline team. It makes a huge difference to chat over things to them or you could you have another chat with your rheumy nurse. It just seems that everyone out there is just too busy to give you any time. I expect it was difficult getting the time off to see your rheumy as it was and in your present state it is difficult to take it all in. I am going to see my rheumy at the beginning of December, who will probably go down the same road with me, because I am not feeling all that bright myself, I am on 20mg of MTX. I expect you are feeling scared about trying something to run side by side the MTX, but I have read a lot about this and it does seem to be ticking all the right boxes with some people. Perhaps AC would have a newsheet for you to read.
If you have some family members who could just give you a helping hand for the next 12 weeks whilst you were to get use to any medication change, it would help you combat the fatigue issues also.
I think that once you have made a decision you will start to feel a lot better.

Joyful

dorcas

Hi Chrissie,

you're in a difficult place flower with all that's going on around you... and with arther stirring things all the time it's not surprising you feel so tired and low in yourself.

I can understand your reluctance to climb further up the meds ladder with the suggestion of anti tnf... but for some peeps ant tnf gives them back a good quality of life, so maybe it is worth considering?
I've been on anti tnfs for the last 7yrs and honestly they aren't scary to be on as the monitoring by rheummy and GP ensures that any problems are quickly dealt with.
But I agree there is a psychological barrier to overcome when you are told that you might need these super drugs... it kind of makes you realise where you're at with the disease (if that makes any sense?), so don't be hard on yourself for feeling confused and upset about it all.

Stress is a factor in flare ups... that's what my rheummy told me too.. but it's not always easy to reduce stress when family or life problems are not within your control to change. Maybe as suggested though you could do with more practical support with your little one?

Take some time out to think things through... and talk about how you feel if you can with loved ones. It takes a lot of energy to maintain the 'I'm fine' mask and you may well find that if you actually tell folks how you really feel that they will rally round and want to help!

Remember too that you have the Helplines to talk to....and that we are here for you Chrissie.

love and (((hugs)))

Iris xxxxx

Rainbow77

Hi Chrissie

There is so much going on in your life at the moment, it sounds like you need to take some time out for you and have a rest. I know it is much easier to say that rather than to do.

When you go to the hospital appt, it is further confirmation that you still have this terrible disease and anti-tnfs are the next stage. That is a scary prospect and you need time to think about it and get it right into your head where you can manage the idea. It is really understandable that you got upset at the appt. It sounds like you needed to let it all out and you have been bottling it up. I am glad that you posted it on here.

From your post on the chit chat forum it is evident that things between you and hubby at not good at the moment. I can't give you any advice on that as I am single, it sounds as if he is out or away alot and you are trying to care for you son. Gosh, 2 year olds are hard work for normal, well people. Is there anyone who can help you with him? I am sure he goes to nursery, would you be able to put him in for a couple of extra sessions to give yourself a break?

It is very easy for people to say that you seem to be coping very well, when inside you just want to scream out that I am not. It sounds like you just need someone to listen to you and you may need to ask for more help at the moment.

You have got a lot on your plate, you need to take some time out for you and have a rest. Can you do that?

I don't know what else to suggest, but just glad you have let it out on here.

Hugs ((((((((((((((((((((((((((((((((((((((())))))))))))))))))))))))))))))))))))

Fayann xxx

barbara12

Hi Chrissie
You have had such good advice off Joy and Iris, you have so much to think about my love, and like you say stress can cause so much.
Like Iris says there are so many people on tnf and they are getting such good results.
I wish I could give you a real hug, I will have to send you these for now
(((((((())))))
Love
Barbara x

frogmorton

Hi Chrissie

You poor thing you are stuck between a rock and a hard place.

Sounds like you are so good at hiding how you really feel from the world, but you do have a HUGE amount on. Small children ( wonderful though they are ) are totally exhausting to be around.

I hope there are others areas of your life that could be distressed? Stress is, as you know and i think Iris said, a major issue with arthritis flaring.

I hope this weekend gives you time to relax and not think about what the next step should be - you will know what to do when the time is right.

Love

Toni xx

annie_mial

Everyone else has said much the same thing.......I rather think you need to sort out the stress first and the medication second when you are clearer in your mind..........but sometimes the stressy bits are not easy to sort out!

Annie

speedalong

Hi Chrissie,

you have a lot on your plate, no wonder you feel so tired. Doing all you are doing would be exhausting to someone without arther, let alone someone battling arther too. Stress definitely magnifies pain as does lack of sleep.

Could your GP help with meds so you at least get a decent night's sleep? Or is that not an option with your little'un?

Do you get all the benefits you are entitled too? If not and you did claim more - would you be able to reduce your hours a bit?

If you are being offered meds that will help - then I would go for it. If arther was better controlled, that would help.

Thinking of you,

Speedy

marion1952

Hi Chrissie

Sorry things are really hard for you at the moment.. I know exactly what you mean about the anti-tnfs.. I know many, many people say they 'give you your life back' but I'm very nervous about going on them too... I've been reassured by hearing about all the people here who are on them though .. I'm at the stage now where one mnute I tell myself I WILL go on them, and the next minute I'm thinking I'll stick with the methotrexate for a bit longer in the hope that it starts to bring the RA under control again .. (I know in my heart of hearts it won't though)..

Hope you start to perk up again soon.. you've achieved so much despite having RA, so you're entitled to feel thoroughly fed up with it at times!!

Take care

Marion x

carola

Chrissie

I am so sorry to read about your worries and pain just now.

Yes, I agree that stress plays a huge negative part in our illnesses - sort out the stress and we're halfway there eh? .... much easier said than done though.

I too worked in Construction before having to give up my career and this I know must just add to your stress levels.

I too used to put a brave face on things however then I went through a wee phase of telling some people just how I felt inside - not just about the illness but about everything else. The support I have received since is incredible. I hope you have people around you that you can confide in and who can then at least provide practical support to you. I just wish we here on the forum could provide that practical support for you!

You are doing the right thing by thinking through med treatment and talking about your other worries and stress. I hope that our words of encouragement give you some comfort and that you start to smile again soon.
Sending positive thoughts.
Carol x

dorcas

Morning Chrissie,

how are you feeling today?

we're still here for you.

Iris xxx

frogmorton

Hi Chrissie

just checking in to see how you are feeling?

I hope you have had some rest and a little 'you' time over the weekend.

Love

toni xx

cthornley

Thanks for everybody's kind words
This weekend hasn't really helped as just after posting the message I was called by my sons nursery to come and pick him up. So I have has a poorly toddler on my own all weekend which hasn't really helped.
We've retreated to watching Scooby Do and having continual cuddles, which has been lovely between the more icky bits of toddler illness

I have decided that I think i'm a bit depressed at the moment and need to get a bit more sorted out before I make any big decisions regarding treatment.
I decided that writing down my feelings to my husband will help a) get him to actually listen to me, b) may help me sort things out in my head, c) set down where I want to try and get to and a point where I need to make decisions about my treatment.
Unfortunately we only have limited help with family so I think I'm gonna have to shock my husband into reality into sorting out helping a bit more as I can't go on as I have been.
Thanks for listening
sometimes i don't know what i'd do without this board
Chrissie

frogmorton

Ther you go Chrissie

you have a plan your own plan and it sounds a goer to me

If littleun goes back in to nursery tomorrow you might get a chance to start writing stuff down. If not you enjoy those cuddles - mine are few and far between now

Love

Toni xx