Two steps forward and one back!

Slosh

Well I managed to stagger through to the end of my first full time week, though my hopes of having a quieter day on Friday were scuppered by the fact that I had to make two child protection referrals. After 18 months it was good to be off reduced hours/sick notes, but I am still struggling with how exhausted I get by the end of the week, I really do slow down in the literal sense of the word!

I had my brain MRI today so now just have to wait until mid November to see neurology and get my results. However I have decided to see my GP tomorrow, not just to discuss my physical tiredness, but that things like my walking get worse as the week goes on, and also as I noticed last week that my left leg (my dodgy one), is starting to turn outwards especially as I get tired and that my leg is starting to ache more. I'm tring to persuade myself that at least it's positive that I now know to see my GP about changes like this sooner rather than later...I was brought up in the "don't bother the doctor unless you're really ill" tradition and find it quite hard to change my mind set and not apologise for wasting his time when I see him.
Still one week to half-term and I have treated myself to a spa mini-break as a reward.

dreamdaisy

You have a great deal on your plate and I cannot help but think that you are being somewhat over-ambitious with the whole work thing, but I can understand why. It must be hard to come to terms with the fact that life has changed beyond all recognition, that the health interruptions of the past year or so haven't been sorted as fully as one would like and - oh yes - the tiredness. Yaaaaaaaaaaaawn. It's draining, isn't it? Yaaaaaaaaawn. On the plus side, at least you're not office-bound, Monday to Friday, 9 - 5 with only two or three weeks annual leave per year.

As an old hand at this I can see why things get physically harder towards the end of the week - your much smaller reserves of energy are nearly all used up. I used to find Thursdays and Fridays tough when I was teaching for that very reason. - they were physically harder (even now I remember throwing up in the bin thanks to pain when kicked in the knee by a fidgety 7 year old on a Friday and I had to make him feel better) and concentration? What concentration? I now find that my reserves of what I laughingly call 'energy' are more frequently gone just with the process of getting up, breakfasting, showering and dressing. BAM. All the day's spoons gone.

I was lucky in that I knew, aged eight, that my life was nothing like those of my peers and never would be. I didn't know how right I was but for me this decline is not a surprise. Disappointing yes, depressing, yes, but a surprise? No. For you and others like you when these things set in after a better quality of life it must be so hard. Two forward and one back is not that bad a ratio but, when you're in the middle of it, it's not on. DD

Slosh

Wise words as ever DD. In terms of the work thing it has become a standing joke between me and my headteacher that I have a very strong protestant work ethic!
I had assumed that since I am lucky enough only to have OA and not RA, that once I got back into the routine of work the extreme fatigue would reduce. I think you're right in that my energy reserves get used up more quickly, I don't think I remember to factor in the extra effort and energy that even simple things take.

I also set myself high standards and expect a lot from myself, which probably doesn't help either, and I don't want to let people or children down.

I have wondered if working full time is sustainable, even though my basic day is about 2-2 1/2 hours shorter than it used to be. I think the most sensible plan is not to make any quick decisions but wait for the outcome of my neurology appointment and see what comes out of that, then seek advice if needed from my professional body, and explore my options, one might be that I might be able to negotiate working from home one day a week. It's just a lot to have to think about, and my gradually rising levels of anxiety about my neurology appointment don't help.

theresak

I can do nothing but admire the way you cope at work, and the determination to continue to do so. Your job is very demanding, and your OA and neurological worries will all had to the considerable load on your plate.

I can relate to the lack of energy at the end of the week - I was a teacher in a large comprehensive school, and always believe it's a job where there is no hiding place. If you're in front of a class and feeling weary, those in your charge still need to be energised and motivated, and educated. You can't put your head on the desk and take a nap, even when the fatigue is crushing.

I think it's a very sensible plan to see what comes out of the neurology appointment and then take stock.

Meantime, enjoy half-term when it comes, and your spa session.

Tezz x

Slosh

Thank you for your encouraging words. I'm not class based as I'm an Inclusion Manager /SENCO, but it is a demanding role nevertheless. All my access to work stuff is now in place so hopefully I will start to feel the benefit, and I have plenty of people keeping an eye on me to make surevI don't do anything silly.

Megrose489

Everytime time I read one of your posts, Slosh, I'm full of admiration for your perseverance and commitment.

I taught as a job-share in primary and even then I was always worn out by the end of the week, so heaven knows how you feel. It wasn't simply the teaching that exhausted me, it was all the extra stresses that teaching entails and, in your case, I know that SENCOs have so much responsibility.

I think you're wise to wait for the result of your neurology appointment and then see what is do-able, without burning yourself out.

Take care.

Meg

Slosh

Reading all these posts I am beginning to wonder if I have a doppelganger!
Seriously though, thank you all for your words of encouragement, even though I'm not sure I really deserve them.
Be good to see my GP tomorrow and have a good chat with him about things.

stickywicket

No. No doppelganger. Just you Mind you, we could cope with two of you

Two steps forward and one back gets you one step forward. That's a triumph, Slosh.

Another triumph is overcoming your upbringing and seeing the doc before things get critical. I know GPs can be overwhelmed with the trivial but your problems are in no way trivial and far better to get the expert's advice. Focus on that spa and well done for booking it.

hileena111

Hi Slosh
You are doing so well.....just keep thinking about half term then about the spa break. You definitely need to put in little rewards for yourself .......all the time I think.....not just school holidays.
OK just little things. Decide that every two weeks {or whatever suits} you will do a certain thing that you like....a treat....doesn't have to be expensive ....and PUT IT IN YOUR DIARY!!!!
I think you {we} all need little things to look forward to.
Good luck with your Nov appointment.
Then you can re think where you stand
Love
Hileena

dreamdaisy

I used to have standards but over the years they have steadily dropped so I can still feel a sense of achievement, no matter how small the triumph (and some of them are almost invisible even to me because they're so small). Mind you, I'm eighteen years in so have a head start on this.

No-one is indispensable. You are fortunate in that you are getting a great deal of support from your Head etc. but now some thought will have to be given about how you are going to manage in the future, and what adjustments you will have to make in your approach to things. This will take time, and you will have to find your own solutions, but I am sure there are things that can be altered which will enable you to continue working for some time yet. This is probably best tackled once you have the results of the MRI - that's the next thing we have to tackle. I hope your GPs appointment is helpful, I'm not sure what he will be able to offer but it's best to keep all our medicos in the loop. DD

LignumVitae

You really are amazing. DD is right - there is always further adjustments that can be made. I know with me fatigue is like the bank - once you are in the red it takes much effort and economising the get the balance back. When this flare/loss of control started with me I was in bed for 8.30 each night (toddlers allowing). By doing that and cutting out other things and generally economising I now manage a whooping 10pm most nights which gives me a bit of time with Mr LV when the girls are asleep. Not every night but most. Maybe going back to work quite rapidly has put you in the red a bit and you need to cut back to get back in the black?

Slosh

Thank you both so much.
Just got back from GP, I hadn't seen him for a while so just wanted to update him and get my leg checked as I know that if it is anything serious he would send me straight up to A and E.
On a positive as all you wise people have already said the fatigue, and increasing slowness over the week is just the price to pay for being back at work, he did offer to sign me off but got a swift "no" from me!
He checked my leg but there was no change in it, and the increasing heaviness in it is again the effect of working.
That was the good bit! What was less good was that he told me that what the concern is and why I have been sent for a brain MRI ahead of seeing neurology... I may have MS.

Obviously that was one of the things running around in my mind but rather scary to hear it said. Just need to wait until I see neurology next month. Think I'm going to need all your support between then and now.

It's my EPP morning but as I've not had the best weekend I may take it easy and then go into work for the afternoon.

dreamdaisy

Oh my word. Oh honey, I sincerely hope not. ((( ))) We'll be here whenever required. DD

Megrose489

Just hugs ((())) Slosh and support whenever you need it.

Meg

LignumVitae

(((((((()))))))) Slosh, much love, support, hugs and hand holding should it be required

barbara12

Hello slosh sorry I am late been away for a few days, blimey you are having everything thrown at you, I really do admire all you do with work ,and life itself, I will have everything crossed for you that the scans are clear..please let us know how you get on..(((()))) xx

hileena111

Awww Slosh
That's awful ....if it is right. I know you thought about it but having it actually said to you is different.
We are all here to help/ hold hand or whatever
Just give a shout
Lots of ((((())))) and love
Hileena

stickywicket

So, there is the good news and the potentially bad news. Hang on to that adverb, Slosh. Your medical team have always sounded to be very on the ball to me – the sort who would check potential problems sooner, when they first become a possibility, rather than later, when they become a likelihood.

So, it had been 'running round your mind'. These are scary thoughts but you don't have to be alone with them. In the confines of our own minds they bounce around, echo and magnify. Share them with us. They might not, strictly, be about arthritis but anything that stresses us makes the arthritis worse. Plus we care. End of.

theresak

Hi Slosh,
Another thing to put on your already full plate. Just want you to know I'm wishing you well, and hoping there is another less nasty cause for your problems.

I haven't been a member long, but soon realised there are so many kind and caring people on these boards.

Take care,

Tezz x

Slosh

Thank you all so much. I do have an on the ball consultant who has made sure I had my head MRI before I see neurology. It's hearing it said as a possibility which is a bit scary, but it's great to have all of you supporting me, and obviously I will be asking for pocket duties closer to the date. Had a good chat with my daughter, went into work and focused on that. My plan for the next four weeks is to shut out the thought as much as I can, remember that it is just a possibility at present, focus on work and enjoy my break next week and the other nice things I have planned.

Oh and I am NOT going to google MS and scare myself silly!

You are all so great!