So today I had my last minute booking as I was not feeling great with nausea and diarrhoea from MTX. It was a dose of realism for me about RD and the nurse making me realise something has to give.
The good notes are my CPR has gone down a lot in 8 weeks of mTX and bloods all better. However I now need to do a work life balance check and change work hours. I did cry in the consult ' I feel I am losing me' which set hubby off seeing me so sad. But I know I need to drop a work day but nurse was great and we came up with a plan that I felt better about than just being off for 2-4 weeks so putting it to HR tomorrow and keep my fingers crossed.
I am going to try MTX for another 8 weeks as its not all bad but I know I need to change life and work next to see what I can do to improve things for me and my nest buddie RD!
Bless you, it’s not easy, is it? I remember the same realisations - coming up to 6 years ago! I’d already gone from 5 full working days to 4 1/2; then down to 4. We were expecting our 1st grandchild when I was diagnosed - when she was born a few months later, I went to 3 days a week - I wanted to help with childcare when our daughter returned to work. I’ve since been diagnosed with fibromyalgia too - that also took its toll, and I reduced my hours again, very slightly, so that I start at 9.30 which gives me chance to ‘get going’ in the mornings! It does take a long time to find the right balance, and to pace yourself - try not to stress too much, and listen to your body. Personally, when I started to find 3 days working, childcare, housework etc was gett8ng too much, I thought very carefully sbout what I was prepared to give up next - it was the housework! So now we have a lovely lady to clean for us, only once a fortnight, but it means I know it’s being done properly and regularly; and I (we!) can keep on top of it in the meantime - and it’s cheaper than dropping more hours at work!
Again Deeb...this is not what you will want to hear, but I can’t help thinking that if you took a good break over Christmas....had a a continuous time to deal with your d&v...... it would give your system a chance to accommodate your reaction to Mtx , & go forward into 2020 refreshed. You surely can’t enjoy feeling this bad all the time?
All the time you are fighting taking a break your immune system is under more stress.....which we all know does not auger well .....& will only make it less likely you will feel any better.
I’m sure everybody on this forum has had to make life style adjustments to go on to lead their lives in a meaningful way .......& have realised it is not giving in....Jut reality.......we are all just making the best of the rotten luck we have all been dealt in having RD.
I know Deeb RD and change.. my life now is unrecognisable compared to only 18 months ago I honestly thought this disease would not beat me and I would rise above it.... how wrong could I be 🥺🥺
Don’t give up hope J1707, you will get there it’s just sometimes a long journey. But even though you may not beat it completely you will still have a life just a bit different to the one you had before. It can still be good, you just change your outlook and do things differently but you can still do them. There’s really so much better treatment options nowadays. My life is a whole lot better since biologics came along. I hope you find the right meds for you soon.
I know it seems a lost cause...J1707...... But there honestly is light at the end of the tunnel ......you just have to grow the patience Gene. We all feel like that sometimes .....even those of us who have been diagnosed a long time can suddenly get a hiccup.
So just be be grateful you are being treated now when there are so many new drugs appearing.... Have you read of the horrendous treatment that was meted out only around 30 years ago......& most of that didn’t work!
I understand other than work balance as I just couldn't balance there was no way I could continue to foster. I had stopped teaching and had always wanted to foster. Long story but just couldn't work. I wish you well.
I had to give up a career I enjoyed, I just could not manage. But life moves on and other things take the place of your work and career. Three years on and I could not imagine having to get up of a morning and go to work anymore.
The freedom of less hours and improved health will see you through.
I've found acceptance and patience to be more beneficial than trying to fight a losing battle.
I also did the cutting hours but eventually i had enough and retired at 49. Three years later... i no longer use a walking stick i dont get swollen joints and my pain has decreased. My AS is under control. I was amazed how stress can take over your body.
I found injecting MTX meant the diarrhoea was much better. I am also less stressed about killing all my gut bugs every time I take a dose. I still feel a bit wiped out the 36 hours after the dose but give myself "a day off".
Thanks all working through the changes and getting to a better place. Booked a 2 night away in Northumberland so I can show hubby childhood memories x
In regards to having time off it was a chat the nurse and I had. If I took say 3-4 weeks off or do a planned reduced system what would I get the best out of.
The decision for me was based on mental health too, as I know how I am and just sitting at home and resting would be mentally a challenge. As the nurse said mental health is a big part too and I am healthy here and I need to feel my brain is being worked as well but not to an overloaded and stressed way, even if the body does not want to do so much.
So I feel positive that I have looked at the whole picture and now taking steps to reduce and refine what I need, my body needs and overall the job that I have and what is best for them and the team who I have so much support from.
This is a slow burner illness to me, so I need to plan and think and DO!
Debs not working doesn't mean sitting at home resting as you put it. That would be very bad for you and not what people are suggesting.
But not having to get up travel to and from work, be under pressure to perform to a high level for full time hours brings benefits to the health of many people with RD.
There is a big world out there with lots of things to do, to dip in and out of, to participate in as when. You can set your own challenges, if needed, and do things at a pace to keep you well.
Many of the people on this site have hobbies and activities that keep them occupied and active.
I have undertaken family history courses face to face and online, have traced my family back to 1796 and am now compiling a book for my wee 20 month grandson.
When well I'm an avid reader and belong to 2 book groups, one face to face, one postal.
I attend a spa 1/2 week.
I meet friends for coffee/lunch regularly.
I belong to several village activities and attend when well.
I am usually enrolled in an adult education course of some type throughout the year, I don't make every session, but go when I can. I inform the tutors of my condition, everyone has been more than accommodating of my sometimes irregular attendance.
I drive myself to various local nature spots, get out my chair, flask, sandwiches, camera and soak it all up.
I see my family regularly.
I just bought a mobile home, yesterday. 1 hrs drive from my house in a fantastic spot with amazing views.
Sometimes I do sit at home an rest and am thankful I don't work so I can do all of the above without making myself unwell !
Well said Mmrr, if I didn’t have my voluntary work to get me up and out of the house I would be in far worse a state. It’s not taxing or stressful and it’s not a problem if I can’t make it, yet I feel appreciated and useful.
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Dental treatment and MTX
Emergency Consult....
Just got to keep going.....
