Sjogrens World Forums

Sjogrens Topics => Living With Sjogren's => Topic started by: beverley on February 03, 2010, 11:37:51 AM

Title: You and Me both Wen
Post by: beverley on February 03, 2010, 11:37:51 AM
Dear all,

16 months since my last major flare and the way I feel has been described so eloquently by Wen UK in her topic that I would be wasting your time to repeat it all.

My problem is guilt.  I wasn't too good at the weekend and my husband wanted me to ring in sick on Monday morning (I am a primary school teacher for Y5/6 (K7 I think in the States) and am Special Educational Needs co-ordinator and literacy co-ordinator as well), but I didn't want to let myself give in, so went and guess what .... the Headteacher came in and said he had had the call that morning that Ofsted (School Inspectors) were coming in on Wednesday (today) and Thursday of this week.  We have a fantastic little school with a dedicated staff, but last summer my Y6 children (who were very bright and expected to do well) did not get good results in the SATs, so Ofsted were coming in with the idea that the school had problems.  Well I'm tempted to say they do have a problem ... my name is Beverley ....Anyway I definitely could not go ill then and so I panicked to get things ready for the inspectors and last night I had a major melt down.  My boss came into my classroom and found me sobbing into the arms of my friend (she is the site supervisor) and he said 'Why didn't you tell me you were having a flare?' and I said 'because before I could say anything you told me Ofsted were coming and I couldn't let you down.'  Well the long and short of it was he sent me home and said he didn't want to see me for a couple of weeks at least.  He knows I can go back too soon and then I have to go off again and the school has to fit the bill because the insurance for supply teachers doesn't kick in until the third day I'm away.  I've left all my colleagues (friends) to face the inspection alone, and I wouldn't blame them if they hated me.

So here I am suffering, as Wen says, not pain but hurt all over.  It started to come out last night.  Fatigue first then aching - it's my usual pattern.  Lots of tears and my husband being brilliant and my Headteacher telling him that he doesn't think I'm going to last til I retire because physcially I'm not well enough. I'm the main breadwinner and pay the mortgage and I really can't give up work - so that makes me worse because I feel so worried and stressed.

So Wen I'm with you and I'm really sorry to hear that you are bad.

Title: Re: You and Me both Wen
Post by: navydad on February 03, 2010, 12:16:11 PM
Bev,, you cry and sob as much as you want,, you deserve it,, yo u mourn for what you have lost,, you fear for the future,, and your just plain terrified of what the next minute is going to bring, were all not saints here,, but I ask myself,, and I;m sure you  do too,, is WHY,, what did I do to deserve this,, and the short answer is nothing, I was reading something yesterday in the waiting room, and a article was discussing why some people get this one rare disease,, after teh doctor went through all the reasons why, the last reason was just this,, JUST DUMB LUCK,,, but that doesnt make it any better for you,, or me or anyone else on this board,, we all have our barges to tow,, slome heavier then others,, I sure as heck mourn,, I mourn for the legs that use to carry me up our steep hills,, I mourn for the nerves I had that werent diseased and killed now,, and left me with something that just feels like things crawling all over me,
  Do what you were told,, take some time off,, call the mortage company,, dont put that off,, they will listen,, they sure dont want another forclosure on there hands,, they would rather you pay something thennothing,, I think things will get better,, i dont say things wil lget better anymore,, maybe for someone without this miserable illness can get away with saying it,, but for us,, I just dont kow,, unless we just accept we love to be sick,, and I have met some people who love to be sick,, if only for the attention
Hug to you Bev,, you need one,, but only one  I;m married  ;)
Title: Re: You and Me both Wen
Post by: Dolly Dimples on February 03, 2010, 12:48:30 PM
  Hi Beverley, am so sorry to read your sad thread,
                                                              but wise words from Navy Dad, he sure does know about this condition!
                                       Wish we could cure everyone with gentle hugs, but unforunately not!
                                            Hope you and Wen will feel much better soon.
                                                                          Till then my thoughts and prayers are with you,
                                                                      Hugs Dolly
Title: Re: You and Me both Wen
Post by: Katybarstool on February 03, 2010, 12:53:09 PM
Hi Beverley

I think your head did exactly the right thing. Those Ofsted inspections are feared far and wide, and make even well people ill. Try not to feel guilty, this is your health, and you have to live with it when it breaks down. You did the right thing.

Sending you a big hug.

Title: Re: You and Me both Wen
Post by: harrigan on February 03, 2010, 01:18:24 PM
Oh Beverley - pm me if you like but I so know what you are feeling.  We have much in common. I'm Literacy Coordinator at a high school and had ofsted coming in a 28 day window with half an hour notice in last 4 weeks of autumn term. Pressure was enormous.  I took 2 days off with no voice and went back way too early out of guilt and because I didn't want anyone saying I was off because of my birthday.  So on my 50th I'd been back in for 20 mins when we were told the inspectors were in the car park.

They only saw 6 lessons and I was 1st out of a staff of 70 odd.  I was ill, nervous and satisfactory - felt really guilty about letting everyone down as we got an overall satisfactory.  Sometimes it is the best thing for everyone if you take the time off and get better.  Your head sounds a lot more understanding than some!  Take time to rest and get better.  Please don't feel guilty as you really can't help the time when you get a flare.  My thoughts are with you xx Ailsa

Title: Re: You and Me both Wen
Post by: jordozmom on February 03, 2010, 01:43:40 PM
Beverley -

I know just how you feel.  I am going through the same thing.  Had a flare that just doesn't seem to be going away and work is becoming nearly impossible.  When I actually make it to work (sometimes even on time!), I feel like I might as well not be there because I am so tired and fatigued and sore that I can barely even function.  My memory is shot, I lose things all of the time, and I keep making mistake after mistake.  I used to have great work ethic and now I just don't even care - I just want to go home and get back in bed and rest and put heat on my aching joints.  Then comes the resentment that my jobs takes up all of my energy and I have nothing left for my family and household.  My spouse and I have discussed my quitting, but I just don't know if we can afford it.  But there are days where I could just sit at my desk and sob because it is so incredibly miserable.

Good luck, dear!!!
Title: Re: You and Me both Wen
Post by: beverley on February 04, 2010, 03:09:47 AM
Thank you everyone.  It makes me feel a lot better when I hear everyone listing the symptoms that I have and think I am imagining or using as an excuse.  I don't want to make unnecessary problems by giving up work and part of me thinks that it is just a blip and I will be fine in a minute.  To a certain extent it is true and I will (once the flare is over) have a period of time when I cope quite well, but then slowly things get on top of me and I start to go downhill again.  Til now, big flares have been a couple of years apart with minor flares every couple of months, but this flare is only 16 months since the last big one and I worry they are getting closer together.

You are all correct when you say my head is good.  His big worry is that by the time I retire I will have exarcebated my condition and will be unwell all the time and unable to enjoy my retirement.  He is right, but I don't have the option to go early.  He has suggested that we try and set me up as an area SENCO (special needs coordinator) looking after several schools.  This wouldn't be class teaching based which would cut my workload considerably and I could keep going part time, but I am not sure it would pay enough to be viable.

Thank you Ailsa for your reassurance - you've been there so I really value your comments.  What kind of job are we in where 'satisfactory' actually mean rubbish!

Thanks for the hug Navydad - I won't tell your wife ...

Title: Re: You and Me both Wen
Post by: beverley on February 04, 2010, 04:03:16 AM
Have just heard from school - the inspectors are going by data only and because my SATs were poor they are giving a bad verdict.  Some of the data was incorrect, but because of workload I didn't pick it up til the summer holidays and missed the appeal date - the inspection team appealed to their bosses to allow the corrected data, backed up by assessment from the Secondary school, to be considered and they said no.  My colleague sounded exhausted in her email.  I am so ashamed, I feel I can't go back and face everyone.  No parent will want me teaching their child after this.

I have two mortgages, the household bills, and the food bills to pay every month - what the heck will I do?  I just want to run away and not have to face everyone.

Sorry this is not really a post, it is just a way of letting the pain and worry out.

Title: Re: You and Me both Wen
Post by: olmphoto2 on February 04, 2010, 06:23:33 AM
( ( ( {{{ ( ( ( BEVERLY ) ) ) }}} ) ) )
[gentles hugs]
Title: Re: You and Me both Wen
Post by: harlin on February 04, 2010, 07:06:35 AM
I am so sorry, I know how you feel. I too am in a flare. I am hurting all over and cannot concentrate.
I had to quit my job as i could not do it anymore. I was a medical biller and the insurance changes minute to minute and I could not keep up. My short term memory is shot. It will be a struggle not making any money but I'll learn to cut back where I can.
Please don't beat yourself up over this, we try the best we can with the situation we are given. Chin up.
many many hugs and prayers for you
Title: Re: You and Me both Wen
Post by: Bucky on February 04, 2010, 11:21:53 AM

I'm sorry you are having such a rough time with a flare right now.  Plus, add a school inspection to the mix and it's enough to drive a person nuts.   :o  I use to work in the school kitchen and just the word that the health inspector was in the building sent everyone into the panic mode (we had no advance warning - they would just show up).

I know you have mentioned that you are the main breadwinner in your family and that you need to work.  Maybe the job the Headteacher mentioned may not pay as much as you are making now, but it would allow you to keep working and reduce your stress in the classroom.  In previous posts you mention how your job requires a lot of concentration.  Maybe not dealing with the classroom full of children will help your concentration.  You won't have to refill any glue bottles either.   :D

Obviously, your colleagues know you have to take time off work when you get your bad flares.  I'm not sure if they know about your Sjogren's or not - guess it doesn't really matter.  But, I do wonder if they think you are not physically able to do your job any more?  Do you have a contract with the school for employment?  Your job (Special Educational Needs) is something that is really needed in the school system.  I hope that something can be worked out so you can keep your job - whether you consider the offer the Head has suggested, or some other plan. 

Please take care of yourself . . . . you know what stress does to us Sjoggies.  Sending good vibes and thoughts your way.  I hope your flare takes a hike and goes away quickly for you.

Just to quote you from a previous post you once wrote:  "You have to be a special breed to be a Sjoggie - we're the chosen people."

Take care Beverley.
Title: Re: You and Me both Wen
Post by: harrigan on February 04, 2010, 01:04:50 PM
Beverley - I know that nothing fully takes away that feeling that you let people down so it is pointless me saying 'don't feel bad'.  But you are not alone, neither on here with your sjogrens 'family' nor professionally.  Absolutely anyone who knows about KS2 Sats knows that markers are notoriously inaccurate and inconsistent (I mark KS2 and did KS3) so you've got to trust that your results were a blip that you had no control over.

It is awful to be ill at home and listen to colleagues struggling with added problems - but you know that you would, and have, done the same for them.  The data was notoriously wrong last year - we had to scrap an intervention group because results 'changed' in Sept - and you absolutely don't have to justify why you didn't spend the last weeks of term trawling through it all.

I wish I could say the right thing to help you feel less anxious.  I know that all your years in teaching seem to culminate in one bad and biased judgement, but it really isn't true.  All the parents who have trusted their children to you in all the years you have been teaching are evidence of your positive impact.  Please don't think that your job is in danger - and please, please, from someone who is still working at dealing with it, don't feel ashamed.  You have done your very best while struggling with an illness most do not understand.  XX much love, Ailsa
Title: Re: You and Me both Wen
Post by: beverley on February 05, 2010, 11:54:26 AM
Thank you everyone - you really are the best - I don't know what I would do without you all.  The news isn't good and we are waiting to see what our actual category in inspection ratings is.  But we do know that we will have consultants in and out of school all the time monitoring what we are doing.  We will be observed and our planning monitored monthly.  All our marking will be checked to make sure that it is detailed and that we are giving advice to children how to improve and we are due another visit from Ofsted in 8 months, plus drop in unannounced visits from HMI throughout that time.

I have 35 in my class and my marking is very detailed, but always several days behind because I can't keep up.  If I have maths and english to mark that 70 pieces of work and I just cannot get my brain to move quicker.  My planning and differentiation is good, but I am so slow at planning now - I'm almost taking an hour to plan an hour, so that means 20-25 hours just on preparation.  It triggers shaking and tears just telling you guys about it.

I saw the rheumy today.  She is covering maternity for my regular dr.  She (like my GP) is convinced my SJS is secondary to something else (possibly RA), but x rays revealed no bone deterioration so I am not sure she is right.  Still, loads of blood taken and we just wait now.  I actually came home feeling a bit brighter, but then heard more detail about the inspection from my colleague and went straight back down.  We are dreading the parents getting the report.  We are very small school (88 pupils) and everything is very personal.  Thanks again to you all.  It is so good to have somewhere to vent and it is really helpful that some of you have been through similar experiences.

Title: Re: You and Me both Wen
Post by: Chickpea on February 05, 2010, 02:12:51 PM
Hi Beverley

My heart goes out to you. 

Sorry I'm late coming in on this.  I don't have much up-to-date knowledge but I was a school governor for many years, and endured Ofsted inspectors and their patronising attitude towards a school that was doing a brilliant job in a socially deprived area.  It's good to hear that the inspectors at your school tried to get their bosses to allow corrected data - any idea why that wasn't allowed?

It's going to be hard dealing with this when you're mid-flare.  Your headteacher sounds like a supportive and sensible type - can you take the time off as suggested and think this through slowly?  Ailsa has got loads of experience and the rest of us are also more than happy to listen as you work out what to do.

Please, please don't waste time feeling guilty.  You've done your absolute best in very difficult circumstances and been completely professional.  You clearly have valuable skills in SEN - so maybe the peripatetic job might be a good move for you.  There's little in the world more exhausting than classroom teaching!

Hope you have a restful weekend.

Thinking of you - Chickpea
Title: Re: You and Me both Wen
Post by: beverley on February 07, 2010, 05:31:09 AM
Dear all,

With maximum anti-inflammatories building up, my aches and pains are under better control now.  Lack of contact with school means the stress side has eased.  My husband calls this the 'danger period' where I argue that I'm fine now and go back to work too soon.  I'm not going to go in next week and then it's half term.  We're thinking about the feasibility of me being SENCO a couple of days a week and perhaps doing supply or private tuition if I draw down my pension early.  I went into teaching late (40) and have taught for 16 years, so I only have a part pension already.  If take it early (it would be 3 years), I will lose more off of it, but we are seriously wondering if it would be worth losing a bit to relieve the pressure.  Right now, I am trying not to think about it (my husband wishes he could switch me off) but finding it difficult when physically I cannot distract myself with much at the moment.   Still, energy might return during the next week, also seeing GP on Wednesday and he may have other thoughts.  Always feel calmer when I have chatted to you guys.  Thank you so much.

Love to everyone

Title: Re: You and Me both Wen
Post by: harrigan on February 07, 2010, 12:16:36 PM
So glad to hear you are feeling a little better and calmer.  Hope you can work some things out more clearly now you have a bit of thinking space.  I also started teaching late -41- so I understand how you feel about the pension.  Try to relax and listen to your hubby - don't even THINK about going in to school!!  XX Ailsa
Title: Re: You and Me both Wen
Post by: susanep on February 07, 2010, 07:23:35 PM
I know how you feel. I am a teacher(special education), and started late also.I am 56, and have in 15 years. I need to quit, but I am the only one working. My husband is disabled, but not getting a monthly check due to not enough time turned in to social security. He has so far got help with his medical expenses after ending up in the hospital a few years ago.

So when I quit it will be only what I get for us to live on. I try to not think about it.But, it's hard not to when I hurt everywhere, and have nooo energy, and everything at school seems to be going at an even faster pace with many new rules and expectations.

susanep :)
Title: Re: You and Me both Wen
Post by: irish on February 07, 2010, 10:01:41 PM
beverly, I am so sorry to hear about all you are going through.  I am not a teacher but am a retired(disabled) RN and I am familiar with the state coming in and checking things. One year at the facility where I worked we even had the Federal government come in and check us. We had so many good state inspections that the feds didn't trust the state and had to see for themselves.

Anyway, I get it and I can understand what you are going through. I was the main breadwinner at my house too when I had to quit work. It is really stressful when we get to this age and get sideswiped by the illnesses.

I am hoping that the doctors will decide to put you on one of the stronger medications like methotrexate, imuranc, etc to see if they can get your autoimmune stuff under control. I know that if you could feel better you could make it through several years of teaching which would help so much with your future years.

Also, I can also understand what you will be going through at school with all the parents needing to question you and then to have the rechecks being done...NOthing but stress for sure. Things will settle down and all the teachers will have to find a way to cope to get through it. Life is not simple is it??Will be thinking of you and hope and pray that you perk up both physically and emotionally. Just please don't go back to work too soon or it could really knock you off your feet for good. Good luck. Irish ;D
Title: Re: You and Me both Wen
Post by: beverley on February 08, 2010, 06:06:13 AM
You are all so understanding and I can see that many of you have been through similar experiences.  I am off for this week, then it's half term and I think I should be ready to go back then.  However, how long I stay I can't tell.  My husband is very keen that we should sit down and look carefully at all options so I'm not rushing into anything.

Feel much calmer now.  Next step will be to reduce anti-inflamms.  My rheumy has been pressing for me to try MTX and it is my own fault I haven't taken it up, but it is that whole denial thing - I'm not that bad, I can cope, .... you know how it goes!  

Love to everyone - you are the best.

Title: Re: You and Me both Wen
Post by: harrigan on February 08, 2010, 12:23:59 PM
Well Beverley - I took my 1st dose of methotrexate tonight.  Think you ought to join me seeing as we have so much else in common!  Hope you are starting to feel  bit better and more able o look at your options XX Ailsa
Title: Re: You and Me both Wen
Post by: beverley on February 09, 2010, 08:34:57 AM
I may have to go down that road Ailsa - but first I am seriously looking at early retirement and part time work as SENCO to a few schools.  My husband and I have sat down and looked at it and financially it might be doable - possibly - depending ... you know how it goes.  I've had a letter today from my head.  He has referred me to occupational therapy and has suggested that I ought to stay off til Easter - but honestly two weeks and I'll be back on the road - how could I justify being off that long?!  Trying to have a chat with him to find out exactly what he has in mind.

Title: Re: You and Me both Wen
Post by: Katybarstool on February 21, 2010, 01:12:16 PM
Hi Beverley

Am just catching up, after being away for a c ouple of weeks. How are you now? Have you made any decision about going back?

Sending you a sisterly hug.

Title: Re: You and Me both Wen
Post by: harrigan on February 21, 2010, 10:33:14 PM
Kathy - hello!  Lovely to see you back and hoping your holiday was wonderful! XX

Beverley - just wondering how you are this morning and if you are well enough to be going back into school?  Thinking of you and hoping you are feeling more rested and a bit clearer about what future plans.  Take your time, don't feel pressed into rushing into anything XX Ailsa
Title: Re: You and Me both Wen
Post by: Katybarstool on February 22, 2010, 12:39:11 PM

We had a wonderful holiday. The weather was hot, the boat and food fantastic, and I swam in the sea! What more could a girl need?

I've got my first day back at work uunder my belt - and survived my asthma review, even though I have a virus, so life is good.

Thanks for asking.

Title: Re: You and Me both Wen
Post by: beverley on February 22, 2010, 12:41:05 PM
Ailsa you are so kind - thank you.  I did stop posting on this thread because I thought everyone would get fed up ... I'm not feeling much better as yet, still worrying about my class and my special needs children and to top it all have gone down with a bladder infection.  My Dr. thinks it must have been brewing for quite some time as my 'puss' (yuck) reading was off his scale card.  So on meds for that now but have permanent headfuzzache and stiff neck.

Made some phonecalls and sent in paperwork for files and emailed the school secretary with instructions and dates for some outstanding meetings etc. and have now decided that I will not think about school at all for the next two weeks.  I know they have a staff meeting tomorrow night for Ofsted report feedback and that is going to be very grisly I think.  I expect my colleagues will bring me up to date so there may be a few more days of guiltridden soulsearching before I finally switch off.

Thank you for asking Ailsa.

Title: Re: You and Me both Wen
Post by: harrigan on May 12, 2010, 07:41:15 AM
Beverley - just wondered how you have been getting on?  The post from Susan reminded me of you and it struck me I've not seen any posts, or missed them in my own scatty way.  Hope you are feeling better and have come to some conclusions about work. 

By the way - don't ever feel that people will get fed up hearing of your struggles.  We have some of the best listeners in the world on here, and those of us listening one day will be seeking support the next!  XX Ailsa
Title: Re: You and Me both Wen
Post by: syng4hym on May 12, 2010, 09:05:07 AM
Jordozmom:  I could have written what you wrote (minus the husband & family).  I sit at my desk 90% of the time, so fatigued, in pain, and sleepy that I feel like there's no point in me being there. I've become a ditz, forgetting everything.  I have no one else in my household bringing in any money, so quitting for me isn't an option.  I've finally come to accept that I am disabled and have filed for disability.  It's so sad at 41.  SOOOO very sad.  Then I worry about living off what comes in for disability.  Am I going to be able to live off that money?  WOW!  What a state we're all in. 

Title: Re: You and Me both Wen
Post by: beverley on May 12, 2010, 12:22:11 PM
Thank you, you are very kind to want to catch up with me.

I have been off for 3 and 1/2 months now.  My Headteacher wrote to all the staff explaining that they need to make a teaching redundancy and they were looking for volunteers.  I rang him and said I was interested, but of course I am off sick.  He went away and spoke to Human Resources who said they had no problem making me redundant even if I am off sick and he said to them that he thought I would not want to return this academic year.  They agreed.  So my husband and I went to see my Dr. who is brilliant and very supportive, and he signed me off until June 2nd on the understanding that he will then sign me off til the end of August so that I don't have to return before my redundancy.  Did all that make sense?

My Dr. signed me off with reactive depression caused by pressure of work whilst struggling with SJS.  So as it stands I will not be returning to the classroom and I will be redundant at the end of August when I will take Actuarily Reduced pension.  I am not on a full pension anyway because I have been teaching for 16 years and to get full pension you have to have paid into the system for something like 28 years.  But even so it is a reasonable amount.

We have a cottage that we bought for investment on 'buy to let'.  We did it up and rented it out with a view to selling it at a profit later on to clear all our mortgages as they are interest only.  Sadly the market has taken a hammering and now is not the ideal time to sell, but that is what we are trying to do before I lose my salary at the end of August.  I think I have already said my husband is a self employed gardener and he doesn't earn very much at all as he works part time.  He has offered to take on more clients, but I think we should try and survive on pension and me getting a part time job first.

I did think about doing SENCO part time or 1:1 tuition (one of the government's initiatives) but to be honest I don't think I can face either.  On the whole I am pretty good at present although this week I have had a bout of fatigue and have been a bit tearful again.  But I mustn't complain, I am feeling and look (according to friends and family) so much better than I did back in February.

So thank you once again for asking.  The answer is - doing much better, but still a way to go.

You are all great listeners.