Well a lot has happened in 16 weeks but one thing I have learnt is I can cry, I can rant and I can laugh but I am still hopeful. As I was getting worried I was losing my optimistic approach to life. Or the ' you always see the bleep bleep good in people Dee' from my hubby (my american man does cuss a lot).
My relationship work is a tad fraught lately but we are working through the tantrums (from them) and I am learning to take some time off with us both agreeing it is best for last week and this week. So I can REST (key word) and they feel they are doing duty of care.
I have realised I need to plan events for each month and my mission is to go to each one so I feel I am not missing out. Nothing too hard but making sure I connect with friends I love to be near as being surrounded by their friendship is good for the soul.
Me and hubby are planning for the future, what we need what we would like and how we can achieve it. We don't want to feel my RD holds us back or we leave it too late to do a change of lifestyle.
I have learnt to have a love hate relationship with MTX as I SO want it to work and as many on here have said stick to it , it might be a rocky road but better to try and get better with it and YES it takes a while. I hate the nausea but I can also see I am doing less additional pills and so somethingis begining to work for me.
And I have now written this and fried the brain I can now have a little snooze and in the first time in 4 months NOT feel GUILTY hurrah!!!!
Yes darling don't leave it too late . I always thought I would look after Bob when we retired as he is older than me. I thought we would be able to travel, but it didn't work out like that darling.xxxx
I think sylv i that you do re-adjust and think what is important with this illness more than I had expected too.
I just don't want Shawn to feel is this it. I know he sees the nasty side of the illness but I want to get MTX to work for me and start kicking back and doing things we both like too.
We do go away three times a year in this country as it would be too much hassle for both of us to travel abroad. We have a week up north , two weeks in Cornwall and a week in Skegness. We both need a break from the norm, him more than me as he does all the caring so some time away where he doesn't have to worry about the house or the allotment and the kids is great for him. xxxx
It sounds like you have the right attitude to see you through the tough times. If you make plans for you and your husband to do something you will both enjoy then as long as you don’t try and do anything that you are going to suffer for later then you definitely need to find time for that. Work will always be there as will true friends. Maybe if you have some time off atm perhaps go out for a nice meal at a restaurant you like or even a walk in the countryside weather permitting, just something that is for you and your hubby. It’s good to hear that you maybe getting some signs of mtx starting to work hopefully that will continue to improve and you can look forward to many more good times again. It’s difficult sometimes not to let this rotten disease take over but you are you and not your diagnosis. Hope you enjoy a guilt free snooze it’s probably on the cards for me again today too. Take care of you. Sending good vibes and wishing you some better times ahead.
Thanks Leics awaiting a food delivery (this is my form of exercise putting it away today) then a snooze as in my MTX hangover day x
in reply to
Your right about making plans my husband and I were going to travel and walk all over the world. Honestly believed I could get the better of this disease and it would not dictate to me. I pushed myself and ended up with a very severe allergic reaction. Was told if I didn’t stop pushing myself the outcome next time could be very different.( frightened the bejeezus out of me) I now have a epipen. Trying to get our heads around what we want for the future. Hoping meds will eventually change things but until then we are in limbo. My hubby is great but I feel very very guilty that my disease has possibly changed his future too 🥺🥺
We also thought we would travel and lead a carefree retirement, alas it it is not to be....but...we are just doing it differently.
We bought a mobile home just a little over an hours drive away in a beautifully scenic area, a wee bolt hole. It is just beautiful.
Instead of going to our very special place up the North of Scotland once a year, we have been going twice. Yes, we have a quieter time and I don't walk because I can't , but we have great times.
I have membership of a marvellous spa, just a few miles from home with an outdoor heated spa pool that I visit twice a week. And, took my 3 children for an overnight stay at Stobo Castle spa just after Christmas, we had a great time, chilling, relaxing and sitting in the warm water. Real quality time.
Maybe not the tramping the world as we used to do and what I envisaged, but hey...good stuff.
My partner still has itchy feet to undertake one last treck, I've encouraged him to go with his friend, he is a wee bit reluctant to leave me, but, I've accepted that I can't do it, but he should. So I'm trying to persuade him 4/6 weeks is fine to be away, just do it. Enjoy it and I'll do something nice at home or might stay at the mobile home a bit.
So maybe not what we had planned for , but we do things we would not have otherwise done.
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I hope some of the lovely people on this site can help with a social dilemma I have found myself in.
Week 10 Tocilizumab and all is well...
Nurse consult
