Hang on in there Gogs, it will get better

hi Gogs,

i really do feel your pain whenever i read the thread,

i hope life can turn a corner for you soon, and that you also get some help with your Hubby's requirements, it looks like you do have things in the pipe line now.

i was having a cuppa in John Lewis yesterday and saw a Mother with her teenage son who was severly disabled, and saw the care she had to give him to drink and eat, and my blood boiled because my husband said a couple ( not young ) actually got their tray and moved table's, the young man was making involuntary noises .. obviously very ignorant people.

sorry i digress, it just made me realise how much energy is needed to care for someone whatever disability they have, more so when you are struggling healthwise yourself.

i hope you can get things right in your head about keeping on with your medication too, i have hated taking each new drug of mine .. but now i am so thankful i found the courage, this forum helped me way back then when i didn't think i'd make it over to the hospital for my first Humira injection,

sorry to ramble on just made me think about life and what we are dealt,

wishing you well,
Suzanne x

Many thanks Suzanne and Lisa.

Your continued support is very helpful.

Suzanne - I remember some years ago when our eldest son was in a wheelchair with MS - he has since died.
We experienced very similar things from other people during that time - maybe in their ignorance they thought they might 'catch it'!

We saw the consultant my husband see's yesterday, the good news is they are certain now he doesn't have Parkinsonism, the bad news is they
cannot give him any medication for his tremors as they will conflict with his Warfarin. He's also nearly ready for a wheelchair but I would not be in a position
to lift it in and out of the car, and then push him!! I'm just hoping there are some other places he can attend occasionally, should find that out when I get a
visit from someone else at Age UK who has worked at the home where my husband was diagnosed by one of their consultants in a home visit.

I had a long talk with my friend last night about how I'm feeling and she commented again about my diminishing weight. I remember saying to her that I'm not trying to lose weight
I'm just not hungry. I feel as if I no longer want this life (not as it is), but I'm not necessarily suicidal. The medical profession are so afraid of litigation that they cannot take any chances if someone
makes such a comment. sadly in doing that they deny people the opportunity of speaking freely. Say how you really feel and you're whisked away before your feet touch the
ground - that is one of the reasons there is so much suicide, especially among the younger age group. Some years ago I completed a Masters in 'suicide in general practice', the message was very clear
but sadly the situation hasn't changed.

Will I speak with my GP tomorrow when I see him? - probably not, or if I do I will cloak it in such a way that he doesn't get frightened off, thus it's me looking after him, back in the caring role!!

Gogs xx

Thanks Ailsa, I do appreciate all the input you and others are giving me, however I think you
all need a rest, there's only so much you can give a person in supporting them

My problems are not going to go away overnight (how i wish they would), the way I feel wont disappear tomorrow,
the process is very slow and labour intensive, and you have all laboured - thanks

Gogs xx

Dear Gogs,

Please don't worry about off-loading your feelings onto us - our combined shoulders are strong enough to cope, and we won't be giving up on you.

Keep taking one day at a time.

Love, Kathleen x

hi Gogs,

please keep posting, we are all here for you.

from memory you were seeing your GP today?

let's know how things are,

Suzanne x

Hi to everyone, and thanks a million times over

First the minister called this morning, I'm not sure if he was trying to support me or measure me for my plot
It was nice of him though to cal, and he was very supportive.

Later as you all know I went to see my GP (I'm truly fortunate). I did tell him the whole story even down to wanting
to leave this world if there was any easy option. He listened really intently, smiled at the right time and most of all knew what to say to me.
He's going to see what help he can get for me to support myself while caring for Harry.
He's also going to try and get me to see a counsellor (other than NHS - they have an 18 month waiting list in our area!) through one of the charity groups.
We discussed all the drugs I was taking and he thought the respiratory consultant should continue to see me while I'm on anti-TB drugs especially as I
am also on immunosuppressives. I know the RA consultant intends to continue prescribing for me until I am stabilised.

I told him how difficult it is for me to accept my illnesses, he's the first medical person to say that's understandable. He explained that I was still in the acute phase of care
and treatment, that there was a lot of changes that keep taking place and until I reach a more stable position and the drugs (at the correct dose) finally start working
I will continue to feel the way I do. Once the drugs at the proper dose start to have an effect then I will start to accept my condition.
We discussed my continuing neck problems and he has said that he will firstly speak with a neurosurgeon at the same hospital I am now going for my RA care, he hopes that this
man will offer me steroid injections in the facet joints of my neck where he also believes I have RA.

I was surprised that he hadn't had a copy of the MRI report done last November so to speed things up I took a copy later and left it at reception.
I do have an appointment with him again next Monday 3rd March. It's a really helpful feeling to have someone fighting your corner for you.

Thanks to all of you, all your suggestions I have acted upon, you have all given me the most wonderful support. I am immensely grateful to you all.

Love

Gogs

Hi Gogs

So good to hear that your GP was responsive and understanding of your plight. His explanations regarding the medication and RA definitely make sense and hopefully do ease your mind a bit?

Hope things continue to improve.

Love

angie

Hi Gogs,

I`m glad you had such a positive appointment, and that your GP really listened to you. I do hope the RA drugs kick in soon for you - it makes such a huge difference when they do, after all the frustrations that RA brings.

I found counselling worked well for me - things with which I didn`t want to burden/worry my close family with I was able to offload to her, and over the period of about 6 sessions I had, they had a really positive effect.

Take care,

Kathleen x

Thanks everyone.

Went to see my lovely lady in OT today - it was intended that I start the relaxation course, but I think she quickly realised
that I was not really in the right frame of mind for relaxation so we talked - she's an absolute treasure but sadly may have to leave due to NHS reorganisation!!

I'm not quite in the pit I was on three weeks ago but I'm still ready to throw the towel in, if they never give me an appointment again it will suit me!
I don't have any rheumatology appointments lined up for this year, guess I'll just have to wait and see. It's probably just as well because I still
feel very angry at having all these conditions, and I could do with letting off steam (read frustrations) I'm still on that difficult edge and it would take very
little to push me over - for that read trying to control me or force me 'to see sense'.

I hope the OT doesn't have to move she is lovely. I'm still waiting for all these contacts I made to come up with some help for me. A friend who took me
out to lunch yesterday, she too knows of a help group which might be able to take my husband on outings - that would be a nive break for me.

Will know hopefully by next Monday what the neurosurgeon has advised my GP about my neck problem.

Gogs xx