Feel like everything has just hit me............cant do this

parky2

Hi All

Am going to apologise in advance for the moan/rant/possibly feeling incredibly sorry for myself thing!

Had my first Rheumatologist Appointment yesterday and basically I just cant do this.........ok I know its not exactly like I have an option but my head is hurting with all the info that has been mushed in there.

Basically I was previously prescribed diclofenic by my GP which was having no effect. Rheumatologist confirmed yesterday that I definately have an auto immune disease and that all factors point towards Rheumatoid Arthritis. Got a complete top to toe (also discovered apparently I have a urinry tract infection) had blood tests, xrays, a really good chat with Rheumatologist and Nurse. Basically our problem is this..............we have been discussing the possibility of starting a family (Im 24, hubby is 30) yesterday we were told that I would have my next appointment on 20th January and by that time we would need to decided what we wanted to do, try for a baby now or start meds. Im so confused and scared, as i am at the moment there is no way I could look after a baby, my hands are so bad and sore and some of my joints are already starting to go a 'funny shape' Rheumatologist initially wanted to give me a seroid injection yesterday which is how they discovered the UTI. Basically we just dont know what to do for the best.

My second biggy is that I have been signed off work at the moment due to my hands/wrists/feet and im terrified. My boss is fully aware of what is going on but to be honest Im not entirely sure I am fit to do my job. It involves quite a lot of lifting deliveries, etc. My sickline runs until 2nd December and I just dont know what I am going to do. Was considering asking my boss if we could meet maybe for coffee and a chat next week but not sure if this will just make things worse.

Just feeling so down and totally exhausted and useless.

If you are still reading give yourself a big pat on the back and sorry for moaning!

xoxox

debsmartin

Hi

I really felt for you when reading your message, it sounds like your having a really bad time of it, and with the added pressure of thinking of starting a family as well, I think we have all been there when you can't see the light at the end of the tunnel. I know I've sat and cried to myself thinking is this all I've got to look forward to, but after months of the hopsital playing around with my meds things are starting to look better and I try to focus on the postives which I know is hard when you're in so much pain. This is a great forum and you will get loads of help and support - take care

debs

kezzo1

hunny i understand totally where as u are being diag b4 starting a family i was diag straight after the birth of my daugher im 26 and my daughter is 1. its so hard i know i only just starting to accpet what has happend to me! things will get better but u do need to decide now if u want the baby at least u have the option of getting straight onto the meds after the birth now ur diag i had to wait 3 months after and boy was it hard doing night feeds etc nappy changes my hands were all over the place and i was so stiff i could hardly walk. my heart goes out to u!
take care xx

frogmorton

Hi Parky
So sorry you are suffering so much.
We do understand here.
All I can say is you WILL feel more in control in time.
Give it time now - just a little, with your o/h and lots of talking. Together you will be able to decide what is best for you. If you went ahead and tried for a baby now, what kind of support would you have? Could you afford to pay for any? Have you put in for disability living allowance which mught help financially.
Lots of women here seem to have got RA after the birth of their kids.
Some have regreted not having them.
The decision is yours and o/h.
You have until Jan to decide, so maybe you should just be kind to yourself for now and give yourself a chance to greive for the future you had planned.
I wish you all the very best and do hope you will let us all know how you get on.
Take care
Toni x

petmad

sending huggs and warm thoughts.

Take your time to sit with your husband and talk things through, when you have made your decisions regarding your own future it will be time to talk to your boss, if he/she thinks you will no longer be able to do the job then they will have to look at making the job fit you or offering alternative possition.

You, your hubby and the decision re starting a family, or not, come 1st.

Hope

jenzie06

You seem to be in the exact same position as me!!!!!
My partner and I plan to start a family in the summer (we're due to be married in march - I'm 26 in Jan and he's 33). I've just failed anti-TNF drugs fairly spectacularly as they said I was heading into a stroke. Now I'm in the position where I have to either take the one remaining drug available to me or don't take any drugs until we start a family. The remaining drug is so new, the docs don't know what it would do to the baby. But without the drugs I won't be able to work and I may be too ill to enjoy the wedding.
Well, it became all too much yesterday and I had some sort of meltdown - actually laid on the bed and decided that I wasn't going to move, speak or eat ever again. I decided that I was a 2yr old and had to get up and to pull myself together.
I've decided to give up work, and have a couple of steroid injections before the wedding (can't have too many as it makes me put on weight and I don't want to be a fat bride).
It seems that actually making the decision helped reduce the stress levels.
Hope this is of some help - at least you're not on your own.

Shell

I to read your was so sad to read your post and just felt i wanted to add a little to what others have said. Things will look better in a few days when you have had time to think about it.I was hit with bad news my last rhemy appointment and was told i have fibro as wel as Pa i cant begin to tell you how i felt and i was constantly crying never thought i could move on and deal with it. but with time i have some days are better than others might i add.
Just wanted to say you will get all the support you need on here and they are great people and they certainly helped me when i neded them.
Michelle

garagefluffy

Hi Parky

Its a terribly difficult thing to come to terms with, 1 yr on and I'm still grieving for the loss of me as I see it.

No-one but you can make the baby decision, you can be guided by advice but ultimately it has to be the right time for you.

I am lucky in that I have had my little ones before I got ill. However knowing how this disease can knock you in the 1st year I would perhaps suggest waiting to start your family. Time is on your side, you are still young, and maybe a year or so on drugs would put you into remission.

Expect some tears, expect some anger and please dont hesitate to rant, scream or sob on here. We understand.

Jax

lindalegs

Hi Parky,

May I reassure you first that things will get better and your arthritis will settle down with the help of the drugs and the nature of the disease.

You're not useless you're just at a low ebb and have a lot to come to terms with but you will find a way of coping with the hand that you've been dealt.

There's a massive posting on pregnancy and arthritis that you'll possibly find very imformative, you'll need to sit down with a flask of coffee and a meal before you start reading it as it goes on for pages :shock: But it will probably answer some of your questions.

Good luck and try to remember a better day is probably just around the corner.

Luv Legs

magenta

Hello
I was diagnosed with seronegative arthritis 1 month before my wedding and babies were on the agenda basically as soon as. I will cut this short
I had a lot of time off from my work and I worried all the time and got myself stressed. Years later, looking back, the stress made all my pains/inflammation worse. I was told never to have children as it was selfish of me :shock: Again, to cut a long story short, I woke up one day (2yrs after diagnosis) and thought 'I want to have a baby'. I was 33, clock ticking etc. and my hubby and I talked about everything and decided to go for it. My health at that point was ok but after I had made the decision I felt even better. 2 kids later and although things for me are worse I would not change a thing. That's the decision I made and I know everyone is different but I just wanted you to know that it is possible. Take care,
Magenta x

redpoppy

hi parky,i just want to give you a big hug,we all know what your going through and feeling.it is a massive shock when you learn you have a disease like this.i was 29 when i was diagnosed,but at least i had my 2 boys by then.i know your mind must be full of everything at the mo and you wont be able to think straight.but belive me like the other posters say,it will get better.once you get on some medication and get stable you will feel a lot better about everything.it is a battle but dont let it win you.

mrsdalloway

Hi Parky your post brought back memories as my RA came on after the birth of my 1st daughter. My hands didn't work and I had to lift her with my wrists how I never dropped her I don't know. It was hard work and exhausting as she didn't sleep for four years either!! My point is she is a big stroppy 13 year old now and things do get easier it just doesn't feel like it at the time There is never a good time to have kids and you will worry about the affect on your bod but when you see their little faces, especially when they are asleep it is worth it. Good luck! xx

Wonkylegs

Hi Parky,

lots has been said already so I won't re-state it all.

However, I would add three more things to the melting pot .........

If your disease is active then you are less likely to be able to conceive as the activity of your arthritis has a direct affect on fertility. (I know from personal experience and lots of gynae appointments!)

Secondly ..... although your consultant may want you to make a decision by january YOU DON'T HAVE TO ....... although it may be the best option to decide asap to avoid joint damage, he cant make you take a course of treatment that you don't feel comfortable with. There are diffierent drugs that can be tried first. I know from personal experience how difficult this decision is. You have the benefit of youth on your side (may not feel like it!) so there is a chance that you could get the arthritis under control adn then come off your meds to try for a baby.

Some form of counselling (as a couple?) may be of help. We had some counselling as a couple and it really did help us to know how we truly felt, and to face some difficult truths with honesty.

whatever you decide, I wish you the very best of luck and health.

take care & sending you some hugs ((((((((((((((()))))))))

parky2

Hi All

Just wanted to say a big big thank you for all your lovely replies. You have no idea how much better they have made me feel. Sorry I havent posted before now, been feeling so down.........actually dont even know where to begin to describe how I feel.

Got appointment with Occupational Therapist on Friday and while part of me is glad and hopes she can help make things even just slightly easier a bigger part of me is dreading having to admit the things I am struggling with.

Also going to meet my boss on Wednesday, have been signed off sick at the moment and while a part of me knows I need to find some sort of 'normal' balance to my life a bigger part is terrified. Not even too sure what to say to her, any advice? Should I start by trying to explain how I am feeling right now? I honestly have never been so tired in my life..........is that normal?

With regards to the starting a family thing we really are no further on. Everytime we try to talk about it I seem to get really upset.

Hope you are all well and again a big big thank you for your replies

xoxox

katekelly

Hiya,
Just the same as everyone else really. I have 3 girls -2 before and 1 after diagnosis.
I know this is scarey but honestly just as the sun will rise in the morning, there is life after diagnosis I promise.
God bless you during this difficult time
Kate

parky2

xoxox[/quote]
Hiya Parky,i have found my OT to be invaluable,i am fortunate and have 2 Rheumatology specialist OTs who are both very forward thinking and have the benefit of being seconded to Canada where they learned a lot of techniques for living with arthritis and they run management courses,i hope you are lucky to find such a helpful OT.
regarding work,i also have a heavy job(ward based nurse)initialy in the first couple of months i managed,then things got worse before they got better,i was off sick for almost 6months,realt thought id never nurse again,but with a combination of Methotrexate/sulfasalazine,decent painkillers and anti inflamms and support from Occy health,advice from OTs im back working 3 shifts a week...even Occy health have told me they are amazed that im back so soon(i could hardly get out a chair without assistance during the summer)
So there is light at the end of the tunnel..theres no fastrack/quick solution but hang in there things WILL get better.
PS,sorry forgot to add,dont make any drastic decisions about work,take more time off sick whilst you need it,people with RA are protected by The Disability at work act.good luck[/quote]

Thank you so much for your reply and a big well done to you. Sounds like you are going great. Have been thinking tonight that perhaps I am being a bit optimistic in thinking that I may be back at work on tuesday week. Seems that some days I feel not so bad and then I feel like I have been hit by a bus or something! lol

Will that OT be able to offer any advice with regards to returning to work? When I spoke to Rheumatologist she basically said that my hand joints in particular were very inflamed and that ideally she would have like to have give me a steroid injection but I have a UTI. She never really said what she thought about work if you know what I mean? Just kind of skirted around the outside of it.

frogmorton

Hi Parky
Sounds like you ARE bginning to formulate a plan; that is; you know what questions you want to ask and of whom and you are seeing the boss too! Well done
If no-one has said IT IS normal to feel so tired definitely :!:
Keep chugging along as you are - we'll all be her to help and take care
Toni xx