tillytop is not doing too well.

tillytop

Thanks Theresa.

Tilly xxx

stickywicket

tillytop wrote:

I think when it’s you dealing with it day after day and year after year, you just don’t realise sometimes how bad things have got.

I'll definitely buy that, Tilly. In virtually all my worst times, when I've finally been dragged kicking & screaming to the GP or Surgeon or physio by Mr SW, I've only realised after they did something to improve matters how bad I'd really been. Then wondered how and why I'd ploughed on for so long. (Then did it again next time!)

I'm glad you're feeling a bit better and have 'come clean' to Mr TT. Being a bloke, he will probably forget but you'll now find it easier to keep him updated.

Take care.

julie47

oh tilly I am sorry that yesterday didn't go too well :sad: but......In a way I think it did because you have opened up to your lovely husband and your parents and they now know exactly how you have been feeling.
They are now able to help you get through this bad patch.

I am pleased to read that today you are a little brighter, perhaps your talk yesterday has helped you already.

I send loads of hugs and hope you continue to get well.
((((((((((((((((((((((((()))))))))))))))))))))))))) phew! hope I didn't squeeze the breath out of you

Still thinking of you
Juliepf xx

skezier

Hi Tilly,

Flower I am sorry you had such a bad yesterday but think the honesty is better. I think people need to know how your feeling and you needed to say as just saying it can help.

I so empathize with the bit about not noticing..... You know I live with my head in the sand but when it comes out its horrifying.... I stick it back in the sand cus thats my way of living with it if that ales sense?

Its all like a flood gate Tilly but you're doing well to work through it and I am sure your oh is better and happier knowing just how you are?

We hide things cus its hat we do but flower its better they know... even if that means such a bad day for you.

hang in there and leaving a better day draft and a nudge from the deer. ((((( ))))) and a hope. Cris xx

suzygirl

Tilly, thinking of you. Glad your hubby is supportive, and understands. Hope you are feeling brighter today. Sometimes we dont realise just how bad things are till they get better. Unfortunately we get used to being unwell all the time.

(((hugs)))

dorcas

Hi Tilly

I've not been around much (sorry :oops: ) and have just read back your post. What a tough time of it you've been having :shock: but I'm so glad to hear that you are now feeling much better in yourself .

Families and friends aren't always able to understand or appreciate how difficult it is to live with arther, especially as it's an 'unseen' condition.

As for 'us'... you are right in what you say! arther tends to creep up on us and we automatically adjust to the gradual restrictions it brings.. so it comes as a shock to realise the impact it is having on our daily living.
Dealing with it can be likened to a grieving process ..
Denial: Anger: Bargaining: Depression: Acceptance:

The good thing is you are not alone Tilly! there are a lovely bunch of folks here on the forum who understand exactly what you're going through and who are there for you and with you.

Love and ((((hugs))))

Iris xxx

ironic

Hi Tilly,
I think it was for the best that it all spilled out and you have spoken to your family. We do need to release it all now and then. It’s like a great wave that knocks off our feet and we must allow ourselves the occasional slump and not beat ourselves up about it.

Glad to hear that you are feeling a little better and I hope the weekend has improved for you and your lovely husband.

Hugs, Lv, I xx

dreamdaisy

Morning tilly, I think you might be out and about today so I hope you have a good time and are feeling better than recently. DD

theresa4

Morning Tilly
Hope you are feeling better this morning
((()))
Theresa x

tillytop

Thanks again everyone - and so lovely to see you Iris

I AM feeling brighter today thanks. My Mum and Dad have taken it upon themselves (in a nice way) to make sure I have company so I am spending today with them.

Bit of a relevation yesterday - I had been feeling so rotten and gave myself a meth holiday last week because, to be honest, I just couldn't cope with feeling that bad any longer. I was disappointed because it hadn't made as much difference as I had hoped BUT, yesterday evening, after a complete week without the meth, I noticed that both my cough and my breathlessness had improved by about 80%. My madly racing heartbeat is back to normal and the fatigue has improved greatly as well. So if it wasn't for whatever it is I did to my ribs (again :roll:) on Saturday I would actually be feeling almost human today for the first time in a long time. So I think that, other than the obvious nausea and fatigue, the meth may have been causing me more problems than I realised. My liver results aren't great either this time so I think the meth has a lot to answer for. I am giving the meth a miss again this week to see if things get better still. I have a rheumatology appt on Thursday so I will be able to get some advice.

Thanks all for your continued support.

Love Tilly xxx

suzygirl

Tilly, I hope your rheumy appt goes well on Thursday. Its horrible when the meds side effects are as bad as the illness. It gets so complicated trying to sort out what is what.

Enjoy your day with your mom and dad. It sounds as though those who really care for you are rallying round.


Have a lovely day x

dorcas

Have a great day with your folks Tilly hope the sun is shining where you are... 'tis cloudy here!

Meth is such a good drug but it can also be hard on the system sometimes the nausea etc .... are you taking an anti emetic and folic acid too to help with the symptoms?
I'm glad you've got the rheummy to talk it over with on Thursday. If though the meth is effective in keeping arther at bay I wonder if injectable Mtx (methoject) would suit you better? The advantage is that it can be given at a lower dose than tabs as it is more easily absorbed, without losing it's effectiveness .

Anyway, the main thing is that you are feeling better

Love and (((hugs))) for the day..

Iris xxx

stickywicket

It's always good to feel we've discovered a cause & effect with stuff that goes wrong. Maybe on Thursday you and the rheumatologist can work something out together with this one, Tilly.

Meanwhile, have a good day out with your folks. Hope it's as good there as it is here.

roses1

Hi Tilly,

Sorry only just seen your thread (not been on much) glad to read you feeling a bit better! Hope you had a good day with your parents too

More hugs and fingers crossed for a good app with rheumy!

Take care
Rose x

theresa4

Hi Tilly

How did your day go yesterday? Hope you had an enjoyable day.

Sending you some more (((()))) to help you through the next few days too xx

thinking of you
Theresa

julie47

Morning Tillytop

I hope you had a good day yesterday with your mum and dad and I am hoping that today you feel much better.

Still thinking of you
Love Juliepf x

tillytop

Thanks all.

I am still feeling so much better without the meth and feel more positive about my forthcoming rheumatology appt, knowing that I have made the definite decision to stop. Thanks Iris for your suggestion about injected meth - unfortunately when I tried that when I was on meth first time round, the injected meth actually made me feel worse. I just think that, after two goes at meth, for a year or so each time, I have to just accept that it ain't for me. I know that the Rituximab is now working so it's "just" a question of what I need to take alongside to prop it up because it isn't currently enough on its own.

"Head-wise" I am still very up and down but off to my Mum and Dad's again in a min. They just carry on as normal around me (and I wouldn't want them to do anything else) but it means I have some company and don't sink further into the black hole. Don't know what I would do without them at the moment.

Thanks again.

Love Tillyxxx

stickywicket

Tilly, I'm delighted you're feeling a bit better. Good old Mum & Dad. All the best for Thursday.

dreamdaisy

If you know that the meth doesn't suit you then yes, be firm and say 'No more.' There is nothing to be gained in feeling more ill than you need, is there? I know that the meth doesn't affect me too much one way or the other but I always feel vaguely better in myself when I miss a dose for whatever reason. DD

dorcas

So glad you're feeling a bit better Tilly and that you've got such a sensible mum and dad!! the art of caring without fussing... worth it's weight in gold, as I'm sure they are.

Good luck for Thursday! hope your consultant can come up with a better combo for you ... .

Remember we are here for you Tilly...xxx

Iris xxx

suzygirl

Hi Tilly, thinking of you. Just checked in to see if you are ok.
x

tillytop

Thanks again all!

Just been sitting here trying to compile my list of "stuff" to take to my rheumatology appt tomorrow. I have this tendency to leave it til the last minute and then I get stressed about it all so trying to be more organised this time.

Off to my Mum and Dad's again in a minute - or more accurately about to phone my Mum so she can walk with me. I try to walk every day when I can but, having walked with me yesterday my Mum (bless her) says I am too unsteady and breathless to walk on my own. I knew I was struggling but it really hits home when someone else tells it like it is.

Feeling quite bright today though. My Mum and Dad and I have got into the habit of trying to do the Telegraph cryptic crossword over lunch and I really enjoy that.

Thanks again all - and any pocket dwellers welcome for tomorrows appointment cos I will be in serious need of calming vibes. Appt is not until 11.20am but due to traffic and parking, we will be leaving home at crack of dawn.

Love Tilly xxx

valval

right will see you there as need bit of lay in so keep space in pocket for me and my flask and shortbread hugs val

julie47

Tilly I am still thinking of you my lovely and I am so pleased you have your mum and dad to keep you company. Good luck with that crossword, I can only do the ones in the puzzler collection books.
Tomorrow I will be with you in spirit and hope the appointment is a good one.
(I won't be around much tomorrow thats why I wish you luck now)

Love Juliepf x

tillytop

Thanks Val and Julie! Much appreciated.

Tillyxxx