(((Izzie))) I hear you hon...glad you saw your friend...love happy accidents! :wink:
If that was mega self pity then feel free to wrap yourself in it whenever the urge strikes.
You are amazing!
We're here when you're ready.
((((( MizIzz )))))
love you.
Izzie ..... Rest your sweet self up and talk when you have your footing and you want to.
Just wanted to let you know that I'm taking half a vacation day this afternoon. I have a dentist appointment @ 12:30. It's just a 6 month cleaning. No x-rays. So I should be in and out........if you wanna talk. Home around 1:30-ish Eastern time. Luv you!
((((( Izzie )))))[/size]
K
What am I thinking? Ah
it's a little complicated. Hardly surprising, after all - this is Izzie! Possibly it shouldn't be. Possibly I just need to get it out. Have been doing quite well in the "head" - and I'm not falling apart anymore or even close to it
and I won't again, so, I now have to deal with my illness. Steel trap opened.
Funny actually, kinda knew it was coming, and have spoken privately about it - but it's now smacking me down and I don't know what to do, other than get some real hard perspective as reality sets in.
So - I'm early forties
starting my future and yep, I would say happy. Though the consultant said today
"mmmmmmm".
Obviously, y'all know that the rheumatoid has had been running badly for many years - hence all the surgeries blah blah blah. Flaring comes and goes. Have been on meds since my early twenties. I am not serious in the respect I have no internal organ problems. I have hand and feet deformities and eaten joints
but again - not half or remotely as serious as many. Unless someone were looking closely, they would not know I had rheumatoid. Lupus is a whole different ballgame. Lupus affects my connective tissue. These are autoimmune diseases - no cure - but remission, flare, remission, flare
Today the consultant asked me if I could give up work
. In fact, he recommended early retirement. Which has kinda flummoxed me a bit. He understands that I wish to work and enjoy my job, and that is good for my mental health which has a positive affect on my physical health
. And that whole scenario. However, he believes that the fatigue I struggle with is increased by having to work and that will not change. So it's a case of summing up quality of life. He went through it with me
get up, go to work, come home, have to go to bed, get up, be Mom, go to bed. Fatigue runs through - it doesn't stop at the weekends
some days are better than others, some days are bleugh. His thought it is that NOT working would be better for my quality of life. I do not know if I entirely agree
but I understand what he is saying.
The flares are unpredictable - sometimes I can go for weeks feeling energised and "normal" - yep, fatigued, but not poorly. Then I get knocked for six again. But, I have to keep going because I work which means I take longer to get better and struggle in between times. It's also a nightmare for my employer - having a sick employee leave alone the unexpected events that took place with R. When I started my job, I gave my word I would always give them my best. I have tried. I have not succeeded - that's just a fact - it is what it is. At the end of the day, they are a business and friendship cannot play a part in it. My boss is a friend. Which for me personally means, letting her down is more important than letting the business side of things down. I am not indispensable - but I do need my job. I am good at my job.
I am fortunate I work in a school - term time only - 40 weeks per year. I increased my hours over the years and had to up them when I became a single parent. I have to work because I am a single parent. The consultant understands this but says I should think carefully about my long term future. His point to me is
I am not going to get better. Face it. Deal with it. I may not get seriously worse for a some time
.or I may - this may go on for weeks/months
or I may wake up tomorrow feeling better again.
So
. what to do. I have to talk to my boss. I am worried about this. I do not want to stop work. First up, I love my job. Second
. I think getting out the house and seeing others is good for me. Third - my colleagues are brill and I love the kids. Fourth - I have to not feel disabled and useless. This is not a pride thing
that is just who I am. I need to use my brain
I do have one, I love finance, I enjoy what I do - though it would be good to do it from home when I am not fit. Which is partially possible - but not long term for the business of school.
So
will my boss allow me to decrease my hours. Personally she would of course. As a headteacher - I do not know. Legally she has to. I will not do legal with her though. That is just me. It will affect my government employment pension reducing my hours
but, I would rather live for today
.. than thinking about 22 years time at the age of 65 and having a pension. Who knows what is around the corner for any of us. What happened to Tulips husband showed me how precious life is.
If I do this, reduce my hours, I need to do it with my bosses approval, rather than going through Occ.Health. I know I can do it
but for me
I have to do it with her approval, not because I can. We're a small team - we need to be in agreement. I need to know she is alright with it. As a headteacher and me as the sole finance officer and administrator we work very closely hand in hand. A lot of trust. Maximum loyalty.
I can't take early retirement. I mean
. I'm so young
.aren't I? It wouldn't feel right.
But, I could reduce my hours.
The consultant has "insisted" (as much as he can as a doc) that I change my routine. He says the critical key here is sleep. The sleep pattern in the brain could change my life. He has researched this for 25 years. He said
.
Basically, no-one "needs" to sleep per se - sleep is a habit
what happens is - if you cut your finger, the nerve sends a signal to the brain and you feel the pain
.in other words, you have a finger in your brain. The brain then sends out the messages
and the cut is dealt with. So, with the same thought
. My joints cause me pain, huge pain and at times uncontrollable - the reason I don't sleep and when I do sleep, it is medication induced sleep and I still wake up knackered
. Thus, my sleep is not sleep because when I am still in pain, whether asleep or not, the brain is not switching off. It is constantly sending out the signals to the joints/tissue in distress. This is what an autoimmune disease does - it attacks healthy functioning cells and tissue.
Which actually explains a lot. (well, he said it so I could understand it, but I don't know if I have described it well enough)
Therefore, he wants me to go to bed every afternoon. At the same time - and set up a pattern. Not to sleep for hours, but for a "siesta". Then, at nite, yep - continue with the meds right now, and fill up with pain killers - so that somehow my brain will rest and I will "sleep better" - then, possibly my joints will improve a little/lot if the chronic fatigue is less of an issue, which will then help me to sleep. Which makes sense.
Of course, it would be good to not have to take meds and have a "zen" where I could get the pain under control - but you know what, give me chemistry right now, coz my joints are being eaten and my body will not function. When it does function, the disease is not ceasing, its just a little dormant - then, the nasty cells kick back in, and the body fails again.
The sleep thing explains so much
. No-one had ever told me anything like that before. I know the info on sleep and physical and emotional well being - and I know when my mind spins I cannot sleep
.but in a flare, as I have been for a while now, I can be totally and utterly spent
.and still not sleep.
So I am going to give that a go.
What I don't see is how I will manage being able to do 6 hours a day at work. I know that is nothing compared to the hours most people do in their jobs
but I know I can't even manage that right now. What I also can't do is continue to go off sick from work - not in a small school where the budget is too tight already. So, if I reduced my hours - went onto just doing the finance and budgeting - and had an admin assistant in the hours I was not there to do the letters etc etc (which is way, way a cheaper option for the school than my grade anyway) then my body would not be under so much physical pressure to perform. It will mean I lose money. It would mean I have to claim disability living allowance - which the consultant said I should have been receiving years ago. I kinda have a problem with benefits
.that is a pride thing - though now I am not in a position to be proud and stubborn. It came earlier than I thought it would.
When I am well, I live a fast pace - I don't stop. I don't sit and watch TV - but I do now do A2K, so I am stopping "going" in that respect, and have done since January. I always seemed to have somewhere to be, something to do
mostly to keep me occupied so I didn't have to deal with other stuff. I love to be doing - I want to climb trees, scale cliffs
just stuff - I don't like to sit around and do nothing - that's a brain choice, but the body disagrees with it.
Now
physically, I know I struggle even to get up - and then when my body is at it's tiredest
at nite
my brain is working over time because those little white cells are working overtime. When I feel energised I can go great guns, then I will suffer later. I may not feel the pain when I am doing something, but it does catch up with me. The balance there, in my head, is that I choose to LIVE rather than not do the things I feel I need to do, to be the person I am. Oh, I dunno if any of this makes sense.
And yet
I could wake up tomorrow and be fine again.
So. My quandry is how to decide what to do. I think I have realised in my thought time today (after I had my rest thisavo) that I have to reduce my hours. I am worried about talking to my boss. I am worried about going back to work and not being able to do my job. The school breaks up on 23/7 and we return on 4/9. I am not allowed to go back properly (contractually) as I have been off for so long - partly surgery, partly rheum/lupus ill - but I need to get back maybe just a couple hours a day this term. Maybe next week.
I have to have physiotherapy/hydrotherapy, orthotics fitted and GP visits - bloodtests etc. Even doing that
is such hard work. I have contacted the hospital to get an appointment for the occupational therapist. I need to talk to my boss. I need to talk to occupational health. I need to figure out the money side of things. I need to do all this now. It's here. It's running - and I need to deal.
R is still quiet. I assume he has been picked up - I haven't heard differently. Fingers crossed. I will call the House at 10pm.
My parents brought the little fella back from Sports day. It is my Moms bday on the 3/7 and my Dad turns 70 on 7/7. Mom said they are going away for their birthdays as they didn't think anyone had arranged anything for them so they were going away. Can't be doing with that nonsense. Told her so. Did say I hope they have a nice time and good for them. I may be out of line in saying I would do a "guilt trip" - I choose not be gracious right now. I haven't discussed my appointment with them today.
On a big upside - little fella won the bean bag race and the sprinting race. He takes after him Mom when I was an athlete and gymnast!!! Bless him - he was delighted. Certificates presented tomorrow. He took his camera and photos and videos of his friends. He came in tonite beaming.
((((( Izzie )))))
Yes, it all makes sense. No, it isn't the way it should be. Yes, you will find the resolve to make the best choice for you, S, and R.
Wishing things were different for you, but sitting beside you as you adjust to a new set of rules.
shoulda typed NOT
I may be out of line in saying I would NOT do a "guilt trip"
Yep JPB - you're right... it is a new set of rules. Hadn't thought of it that way.
Izzie
Hope everything gets better for you. You certaintly have an awful lot on your plate to deal with but I am sure it will all work out. Sorry to hear you are having all of these health problems but you just have to do what your body tells you to. It is very important that we take care of our bodie's because that is the only body we will ever have. Hope you will be able to make it financially . Does your exhusband have to support your sons? My heart really goes out to you because you are such a nice lady and a strong one at that. I am doing some better with dealing with my problems. I have decided to just live one day at a time and live it to its fullest because I might not be here tomorrow. Will say a little prayer for you. You are a wonderful friend.
Wow. I can't imagine what your life must be like. Well, I can now a little bit because you did a good job of explaining some of the details.
I know you haven't taken life or granted Izze. Your in my thoughts and prayers.
Me too Iz...I am amazed by you. Hugs :wink:
Izzie -- you have a lot on your plate and I am bowled over by how graciously you handle it all. (I am not a particularly demonstrative person but I'm sending you my very first virtual hug (((Izzie)))...so there!)
Oh thanku all so much. You all really give me so much strength, will and determination. Thank you... TC, that means huge to me - really. I'm so grateful you are all here for me and let me talk and let me whinge.
I have just come back from Tulips. She had her dog, Sampson, put down this morning - so she is very sad. Time events are strange to me.
She's OK - kinda, in a numb sort of way - gone to pick the kids up from school early as they are going out tonite. She's gonna go out - it will do her the world of good. It hardly seems fair.... it's so cr*p for her. She still has no internet. Hopefully, next week. She needs to talk too.
R did not give the girl the ring. He is OK - I think. Right now. Maybe tomorrow he will give it to her. I think he was too worried to do it.
I am going to go and lie down for a while.
Love you all too... I mean it... not just words - from the heart. x
Now Mizzz Izz, it's my (ehBeth) turn.
Work on that beautiful sleep. mrs hamburger's been having a bad time with pain for the past, well, too long. She finally saw a pain specialist who explained that her lack of sleep was a factor - no sleep more pain no sleep no improvement in condition no sleep more pain no sleep increased difficulty in thinking clearly no sleep no sleep no sleep more pain
When I spoke to her last night, she told me that with his assistance and advice and a small amount of medication, she has been getting a bit more sleep - and while she doesn't feel great, she feels less bad.
Sleep.
I am sorry to hear about Tulips dog. Give her a hug from me and tell her I miss her. Izzie - bless you hun. Take care of yourself and know I think about you often. You are a blessing and I wish I was closer.
R has been arrested.
He has threatened to kill himself and the police are saying they will have to forcibly strip search him to ensure he cannot endanger himself or others
The House changed the rules again today.
He had a meltdown - threw some furniture down the stairs which went across the office (where 2 staff were) door - they called the police
he has been arrested for criminal damage - he was calm when the police got there, went willingly - just so he could get out of the house. The House had told him because he didnt do "education" today he could not go out or do anything tonite... he has been inside all day - he asked to go to Music Zone for his education - D, his keyworker tried to get it set up, his home tutor said NO - he had to do his COPE award and was not allowed to do music - R was agitated all day - they called me at 4pm and said they were going to tell him the new rules - I said I didn't understand how they could do that... just change rules again - especially after last week - they told him anyway - he had meltdown (he did not have a mobile to use so could not call us) - he doesn't trust them so wont talk to them about he feels...
R was taken away
. amazing how the police got through the front door a!!! walked straight in
R is a mess - hes scared and angry and wants to be dead
I am a mess
I don't know what to do
Ex-hub is on his way to try and prevent a forcible strip search
I don't know what is going to happen to my son - I don't know where he goes tonite.... or tomorrow.... the House haven't a clue what is going to happen
if they lock him up...
he will .... do what... do I say it out loud...
what do i do for him now
i got an email from social services today telling me they are going to see R this week to tell him he can leave care at 16....
he can walk out the door....
Oxygen, hun.
It's good that I is getting involved.
At least he can keep you informed.
BIG, BIG Hugs!!!!
I talked to R on the phone - the seargent understood that R has mental health difficulties and allowed us to talk... I explained that a forcible strip search would hurt him and asked him to prove to them himself that he did not have a weapon on him...
he didn't do it straight away - but he has done it now
the Inspector who I spoke to told me he has an immediate family member who has HFA so he will personally deal with R whilst he is there to try and get some understanding into R
ex-hub is now NOT on his way as the police are contacting the House to see if they are prepared to have R back there..... so we have to sit and wait. If they say NO..... who knows
Be strong Izzie, keep faith, hope things will work out, I have a feeling they will. (((Izzie)))
Deep breaths, hun...
We will be here all night.
