hello again

[harrigan]

Sorry I haven't been around - I have been reading but not felt up to posting.  Does anyone else feel the more poorly they are,the less they feel like doing and the more you have to do to get to all the appointments???

I know I should be grateful as in a few short months I have been seen by a rheumy 4 times, podisatrist, dentist, occupational therapist, Gp etc  but it is sooo hard to keep up with all this and work full time, look after the kids, get them through exams etc and visit/attend to my elderly parents most days.  Everything -hurts and I could sleep foever - apert from when I get in bed, when my legs, shoulders of hands wake me up!

School is so hard at the moment - I have 2 important lesson observations for career progression tomorrow and next week but my head is full of cotton wool.  Last week I lost a set of exam papers that my Y10 had completed.  I decided I must have binned them and was in school at 7am next day, up to the armpits in the giant rubbish skips, sifting through the trash.  No sign of the work so I had to confess.  You can guess how popular I was!  Anyway, today I had arranged for the local Newspaper to come in to report on the burial of a time capsule that some pupils had been working on.  I had one last check through the articles before sealing the capsule and there was Y10's work!

I keep thinking I can't do anything else wrong, then I do!!  I went to OT a week early yesterday.  Luckily, the nurse took pity on me and saw me anyway!  Sorry to ramble on but I feel tired, stressed, aching all over and can't look forward to anything because it all feels like an effort. I feel like someone has turned off my fun switch, mushed up my brain and there must be an effigy of me somewhere with pins in my knees, hands, feet and right shoulder. 

I've marked external exam scripts for the last 7 years to pay for a summer holiday, buit had to decline this year. I went to the training day and just couldn't keep up.  I feel like i've lost who I used to be and don't like who I've become....HELP!!

[ohiolady]

Harrigan,

I'm so sorry for all you are going through.  Reading through your post reminded me of how I've felt many times since the Sjogrens diagnosis.  It sounds like to me, you need to pull back from so much activity and get some rest.  I find that rest is the most beneficial thing I can do for myself.  And, it is tempting to say, I can't, but you must.

I sure hope things will begin to look a little brighter and you can return to some kind of normalcy.

Anna

[fluffiebunnie]

I feel like someone has turned off my fun switch, mushed up my brain and there must be an effigy of me somewhere with pins in my knees, hands, feet and right shoulder. 

I so am in the same place as you... so sorry you are going through this - but you are not alone... I have so many symptoms and so many appointments so far in the future.... no one will make a decision or a diagnosis.... just a constant round of blood tests and chats with various people....  the symptoms are piling up... more stranger every day....

Its no fun is it?  I get so depressed and it all gets on top of me as I am expected to carry on as normal as I cannot be sick without a diagnosis!!!

Keep going.. thats all you can do... you are not alone!

[wednesday mc haggis]

Harrigan/Ailsa

  I l tel you what your problem is?? your ill and your human, its the busiest time of the teaching year, youve got family to see to, your ill and your a single mum, and i have to hand it to you woman i admire you!

Ailsa you cant do it all, youve been someone who has studied, raised kids single handedly, got there, your a born survivor, but SJS is a fickle thing, and its not just being ill, its being completelty fatigued and brain fogged with it thatsn horrible, your doing your best and your still treading water, it cant be easy.

  Somethings going to need to give, your right marking papers for extra money as a thing you did, before you got ill, so many things have changed, and your right its hard to be fun with 50 jobs a day and no energy.

  Worry not about posting, you do what you need to do,   get the kids to help as much as possible, try to arrange to help your parents every second day while its so busy, if they need extra help possibly time to get a scoial worker, not being unkind here, but you ll drop if something doesnt give .

take care of you, try to do what you can and not be super woman and think, ypouve alot to be proud of in life, youve gotten through so much, you should be proud of you

T x

   

[Scottietottie]

Hi Ailsa

Like McT says - something has to give. I remember feeling like you are and I wasn't even working full time. I did have 4 teenage children and a grieving husband but I didn't have parents.  I used to love work and would take on research over the summer and write reports. As I got more brain-fogged I just couldn't do the reading I used to do.

At work I did all the numeracy and literacy sessions and i had to ask my senior worker if she could take over the numeracy because I just couldn't get my head round it any more. She was very supportive. (Her mother had thyroid problems) Then she left and I realised that her replacement was going to expect me to do most of the work (not only numeracy and literacy) - but she was the one who would be being paid. After 2 very stressful months - I left and got another job.

Is there any way you could job share or cut back your teaching hours? You're ill and you are making a superhuman effort to cope and getting that tired is not going to help you feel any better.

I think it's wonderful that you are supporting your parents so well but it does sound as though you could do with a hand.

I should know, but I've forgotten. How old are your children?  They may also have to do more than you feel they ought to. Young people are often quite amazing at rising to challenges if they know why they have to. Could they not help with your parents a bit?  I remember being left with my grandmother when I was a teenager. My mother was trying to find nursing care for her. The hospital had sent her home, telling us she had about 3 weeks. She lived for 3 years. I do remember wondering if she might pass when I was on my own with her. I didn't enjoy coping with bedpans either - but I did it.

For heaven's sake don't worry about not posting. You know we're here if you need us. I totally understand the 'can't be bothered feeling'. In fact I've been there and done that with another forum. As well as being unwell it can be an indicvation of depression. A word with your gP could be in order.

Take care - Scottie

[Katybarstool]

Ailsa

I was wondering where you were. Welcome back.

I'm sorry you are struggling so much at the moment. I did type a long message earlier, but lost it. Anyway, other people have said what I was going to say. Just a thought - as Sjogren's is long term, and it is affecting your every day life, you should be covered by the Disability Discrimination Act. This means that you can ask school to make 'reasonable adjustment' for you. It may be that reasonable adjustment at this time would be more non-pupil contact time, just so you can catch your breath and have time to think your lessons through/catch up. Would it be possible for you to speak to HR/OH about this? Also, it may be that there are benefits you could claim to help with the financial situation. You could try contacting the Benefit Enquiry Line (0800 88 22 00) to see if you are missing anything.

Sending you a big hug.

Kathyx

[harrigan]

Thankyou all so much XX  Doesn't it just feel better to know someone 'gets' the whole picture?  I know I need to have a heart to heart with the 'children' - they' re 13, 16, 18 and 21.  No. 2 son is 23 and lives nearby. At least I won't be in the same position as my parents are - I will be able to share myself out among them all rather than just one of them taking all the flak!!

Thanks for the advice about school and stuff - the OT said I should get a work place assessment done to see how they can help so that's on my list once I get next week out of the way.  I have requested not to have a tutor group next year but not sure I will get it.  That would free up 25 mins a day.  I just hate having gone from someone who was never off and had loads of ideas and enthusiasm to this!  Really appreciate the chance just to say it all - thanks girls!  xx Ailsa

[Chickpea]

Hi sweetie

Sorry I've come to this a bit late.  I'm sure you could have given us all the wise advice we've given you (!) but it's just so much more difficult when it comes to thinking about yourself.

Rest, rest, rest.  We all know it but it's just so difficult to manage.  I think not having a tutor group next year is the very least the school could do as a form of 'adjustment', as Kathy says.  You are certainly entitled to that support from HR at LEA level, as well as help with things like carrying heavy bags, a parking space near the main doors etc.

Have you thought of applying for Disabled Living Allowance?  You can get it while you're working and the extra money might enable you to get a cleaner, buy more ready meals etc.  I can give you more information if you want to pm me.

Hope you have a restful weekend.

Thinking of you - Chickpea