Hello everyone. I love coming and reading posts and seeing familiar names - I find it very reassuing that you are all still here whenever I need a boost. I've been flaring off and on since January, but badly for the last three or four weeks. So badly in fact that having been back in my classroom only 3 days I have had to go sick from school. This is my first sick leave for 18 months. I usually work through it but this time the aching (I will not call it pain cos I know many of you are in real pain) is unbearable. My brain won't work. Planning for my class is complex and I am special needs coordinator as well which takes a lot of concentration and I don't have any! I am sitting here unable to ignore how much I hurt all over. Also today I don't seem to be able to stop crying (dry crying Pooh - oh I sympathise with that comment). Everything makes me start - good stuff, bad stuff, frustration, looking at myself in the mirror ... everything! Recently my rheumy wrote to my Dr. asking him to do six monthly bloods from now on and reducing her contact with me to once a year (not unreasonable because I normally cope fine), and in her letter she said, "Mrs. Etherington continues to work probably harder than she should with her condition." The problem is I can't do anything else. Financially it is not an option to give up, but it seems to be getting more and more difficulty to maintain my energy levels.
I am not going to apologise for moaning, because that is what I came on to do. I don't have anyone I can talk to about this. It just sounds like moaning and whinging. My husband is wonderful but it would be lovely to have someone to offload my emotions and worries onto so that I don't keep wearing him down. I know you guys are always here and I am really grateful for that. How do I pull out of this one? I am on Plaquenil and Naproxen but they don't help me get through flares any quicker - is there any way to get over them other than just waiting for them to pass?
Thanks for listening (reading), at least I get some of it off my chest by writing it down.
Beverley
Hi Beverley :)
When they do those blood tests make sure they check your thyroid functions. I felt soooo much worse when my thyroid went off. I felt ill, aching, heavily depressed and totally unable to think clearly and I actually really wanted to die. It was that bad. I was only working oart time but the job was quite stressful and I really gotto the end of my tether with it.
Since getting my thyroid medicated I feel a load better than I used to although the SjS and accompanying symptoms have actually got worse. I don't feel ill the same and I'm no longer depressed. I have 'downers' but they are more temporary. Various bits hurt but I still don't feel ill.
I hope the flare eases off soon.
Take care - Scottie :)
Hi Beverley,
This sounds like one of those times when you should call your doctor and talk to him/her about these latest symptoms. Especially since they seem to be lasting so long.
If it's something besides a flare going on, waiting isn't going to make it better. You might be in flare though and a short burst of some low dose med might just be what you need. Either way, please notify your doctor and get it sorted out.
I know what miserable feelings this brings and I hate to see you suffer if something as simple as a different med for a couple weeks will help.
Hugs, Pooh
Beverly isn't it awful. One day you're doing ok and the next it can just all go away. I still find that so hard to accept. I've been flaring for the past couple weeks, I can litterally have an ok day between several horrible ones and then back again. it's a hard way to live. I am less able to endure medications, I think I'm not alone in that. But what I do find works for me is heat. 9and if not sleep deep rest) But the heat has to be in specific forms. Like a bathtub as full as it can be and as warm as you can handle and then literally try to let yourself lay downin it with the water covering your ears so there's no sound but your breathing and let your body float in the heat. It always helps my shoulders, neck,face,ear pain as well as body aches. Then other wierd thing I do is get yourself a hot beverage, I use tea, again as hot as you can handle and take a big mouthful and let it sit in your mouth all around your gums and teeth. I find it really helps with the facial, jaw, ear and neck pain. I find that these kinds of pain are what drains me often leading to headaches and neck pain that just is ruthless. I am quite able to handle an awful lot of body/joint pain as long as it stays out of my head!
I hope I don't sound to kooky and maybe it could help. Sandra
Hi Beverley :D
Sorry to hear that you're in the middle of such a state at the moment...& i do believe we can all appreciate what that entails. I too, have to work thru my flares--I work a full time, high volume, 8:30-6 day job & not working means not paying my rent, so I struggle thru it on the wings of anything I can find, that will keep me afloat!
Sandra has a great tip as far as the hot baths go...I relish my hot baths sooo much! Epsom salts are a saving grace when added to a nice hot bath too. This combo has relieved (or at the least, lessened) my aches enough to help me sleep at night on many occassions.
I also am on Plaquenil & prescription Naproxen, but I think what has really helped me the most w/my brain fog & fatigue is Acupuncture. I haven't been able to afford to go the past month, but the last treatments I had, have really done wonders! Altho' by now I'm starting to feel sluggish again (mostly just tired from a nasty romp of sleep deprivation & stress), I can easily say that my cognitive state is sharper than it has been since before my dx. This is very important to me, as my job requires a lot of attention to detail, so since getting dx'd I've been very stressed over making stupid mistakes & not catching them. Not an issue lately!
Not everyone is into Acupuncture, so to each their own, but it has been pretty miraculous for me (& my boyfriend who has other health issues) & I'm very excited about future treatments to see how well my other issues respond. I'm still new to SjS so I've yet to find a way to speed up the flares, so I take them one day at a time, really. Take care to rest up & not overextend yourself & your flare won't drag out, but I know that's easier said than done. I wish I could offer some better advice :-[
Wishing you restfull nights & pain free days, sooner than later!
Thank you everyone for your advice and empathy. Sandra I am going to have a hot bath right now and your hot drink idea for my jaw and neck sounds really good, so I will try that as well. I don't think I could cope with acupuncture Starlore, although I do not doubt its effectiveness - I know people with other ailments who swear by it.
I am going to try to get to the Dr. today. My problem is that once I have rested for a day or two, although the pain doesn't reduce much, my energy levels seem better. I know as soon as I try to concentrate on anything or to do much physically I will be confused and exhausted once again, but before that moment I feel so guilty. It seems like I am malingering - and although my work and colleagues are very supportive, I can't help feeling that they are thinking I'm swinging a leg (sorry very English phrase). We have only just gone back to school and I am worried that my class will not be MY class because I am not there are the beginning. We set up a lot of routines and things in the first three days I was there, but I am worried they are falling behind with their curriculum. God teaching is a killer ... the hours, stress and guilt levels are unbelievable. I just don't know whether I should just say - I'm not coming in next week and if I feel better do work at home, or whether to go with my conscience and say I will be in on Monday and hope the flare is under control. Trouble is if it isn't I won't feel able to duck out again as this costs the school money and our budget is rubbish at present.
Sorry guys you can't answer any of this ... I am thinking out loud really. It is so good to write it down (teacher think) .. it helps me weigh it all up.
Thanks again for your help. I'll try and get to the Dr. and have that bath and think ... perhaps I'll come up with some answers.
Best wishes
Beverley
Beverly is it ridiculous to consider being truthful to your class about what you deal with? (maybe they are too young??) Young people are brilliant and I would think that if I had a teacher that was as concerned about losing my respect it would impact me big and do exactly the opposite. What a good lesson in triumph over tradgedy. I don't think it would hurt students to know that there are all kinds of issues that people face everyday. It might be a very good lesson in patience, compassion and empathy. Sandra
Well Sandra, here I am, hot bathed and a phone conversation with my Doc achieved. The bath was lovely and has definitely impacted on the pain - thanks for the suggestion. My Doc has asked me to have a blood test (again!) for viscosity and ESR and has said this may lead to him speaking to by rheumy. I have gone for being signed off next week (already regretting it and feeling a fraud). I teach a mixed age-group class of Year 5 and 6 (ages 9-11) and my Y6 children do know that I suffer from pain in my joints and being tired and they are very supportive. My Y5's only joined me last Thursday so they are not so familiar with my quirks although they have seen me putting eye drops in periodically. What is sad is that I have a little girl in my Y5's who has a juvenile arthritis and is also on medications and has injections of steroids in her joints (poor little soul) and I feel an even bigger fraud when I think about what she has to put up with - you would never guess, she's always all smiles.
So I reckon I'm going to have immaculate paperwork by the time I go back cos that's the only way to salve my guilt!
Thanks for listening.
Beverley
Hi Beverley :)
Hopefully the 'rest' will help the flare die back. At least working from home you can do a bit and have a break and get back to it in your own time - which you can't do at school. Being sick is not fraudulent! I think all good teachers are concientious though.
Take care - Scottie :)
terrible to be 5 and sick, and these days will be the best of her life regardless I am sure. Loved and supported from all angles without the baggage of guilt and anxiety that we accumulate. No doubt she will learn all that soon enough but for now you two can both relate, that's special. As far as your feeling of fraud, I don't really get that. I can understand perfectly where you are coming from as I read your posts, I think we all can. If you were to turn that around as you read our posts about our struggles I would hope you would never think of us a frauds, in fact I'm sure you wouldn't. You need to be much more rigid about the negative thoughts. Get rid of them they are of absolutley no use. What would you tell your Y5 if she were to bet herself up about no being able to keep up in pysed? Hang in, treat your soul better. Sandra
Beverley think of it this way. A week now just might save a month later on if you keep pushing yourself too far. Its not about being a martyr and soldiering on. I didnt listen to my body in mid july when i got sick. I kept going to work and did double shifts and then got so sick i had to be off for five weeks. Im still not well tho back at work. i have cut down a day but have still had to call in sick at least one day for the last couple of weeks. Dont feel guilty. That will only compound your stress and make you more ill. Instead make the most of the time off. Take those baths, rest relax when you feel good do some paperwork but not too much in one go. Mental fatigue is just as tiring on the body as physical fatigue. Be good to you.
Like you i have a good day sometimes even two, then fall down in a screaming heap. It is so frustrating but coming here is a great help to us and also our partners cause they worry too. Its good to be able to vent to people who actually understand and sympathise.
Take cre keep us posted on what the doc says
Pud
Thank you Sandra and Pudmott, I have taken all the advice on board and I was off work for two weeks. Thought I was more or less back to normal and went back to school Monday (this week). Felt good on Monday although colleague was having a very rough time and I spent an hour and a half cuddling her after school because she's so low and had been waiting for me to come back to school to talk. Went home aching but thought it was just the emotion. Tuesday went not too bad but by the time I got home my feet were painful and my neck hurt again. Went in today feeling very tired and sore and ended up in tears (in my classroom to my shame) because I couldn't squeeze a glue bottle to fill dispensers for the children - my hands were not strong enough and I was slowly curling up - you know that horrible feeling when you kind of crunch up and get smaller and tenser as the aching and throbbing take over. My boss is wonderful, he rushed in and took over so I could go and sit quietly and then he insisted I didn't run my after school club and that he didn't want me to work tomorrow (I don't work Fridays and I can't even manage 4 days at the present). Everyone is so kind but not being there is very hard. I worry about all the things that aren't being done that I would do, about not knowing when I am well and when I'm not, about letting my colleagues down when they need me ............. oh I really hate this disease and I hurt so much tonight .. and I can't stop crying. I'm sorry. I know you'll all understand how I feel. I just want to curl up somewhere warm and not do anything but my brain won't let me. You don't have to read this. It's too depressing and we should be more positive and happy. My Mum says 'you will go to the doctor's tomorrow won't you' and I say ' what's the point, there's nothing they can do, I've just got to live with this.' As you can see I am feeling very sorry for myself, not a pretty sight! Thanks for listening.
Beverley
Beverley
You need a big sisterly ((((HUG)))). It is depressing when one of our Sjoggie family is feeling so unwell, but we are here for you, so we want you to feel free to express exactly how you are feeling.
Kathyx
Awww Beverley ((((((( hugs ))))))))
It's horrible when you want to get going and do something and your body just comes to a grinding halt. I'm so glad you have a sympathetic boss but I'm sorry you're feeling so bad right now.
I have a friend who has Parkinson's disease and she teaches at a primary school. She got something worked out whereby she teaches 4 afternoons a week I think. She find she can manage that but knows that full time would be too much. Is there any way that sort of thing could be arranged? I don't know if you're a lark or an owl but one end of the day may be better than the other.
We can't be positive all the time. Any of us.
Take care - Scottie :)
((((Gentle but warm hugs)))))))
Hey Beverley never apologies for feel low. Its natural when you are feeling so bad. Even the great pud humour goes missing every now and then. I had to call in sick again too today cause i just have so much facial pain and ear aches that everytime a patient buzzer goes off its like someone is actually donging it on my head.
Hang in there mate.Hopefully it will pass soon and you will be back on your feet. Its good that your boss is understanding and your kids will be fine. I know its hard not to worry but it will only make you worse. Take time to look after you honey.
Pud
Thank you everyone, I always feel better when I hear from you all. There never seems to be anyone to ask anything. My Doctor is lovely but he does not have any experience with SJS - and my rheumy is very good but if I try to get to see her I know it will be in three months and not now when I want to ask questions.
Scottie thank you for your suggestions, but unfortunately I am the person who pays all the bills in this house and I have already cut to 4 days a week which has caused some financial difficulties. I cannot afford to do any less so I feel very trapped at times like this.
Can I ask you guys another question? My boss is great, very supportive and I hate messing him about because when I am out it costs the school a lot of money. He says things like don't come back til your sure you're well ....... and that's the problem! I sit and do very little and I start to feel a bit better and then I feel I could cope. I don't rush back which means I am home feeling reasonably well for several days and I think I am ready - so I go back and discover that I am not, and within a few days I crash out again. Here's the question, how do I know when I am well enough to go back? I really need to find a way to measure this, to be sure, because it's not fair on my class (they are fantastic kids), my boss or my colleagues who are so kind to me. Everyone's going to get fed up with me if I go back, then go sick, go back, go sick ... you get the picture. So, how do I know when I'm well?
Beverley
You know Beverley i'd like and answer to that one too. I've been on the same merry go round for two months now i feel well go to work get sick then have timme off feel ok and so it goes. Its just so hard to know.
Pud
Oh Beverley, I really feel for you at the moment and the worse part is knowing that there's nothing I can do to make you feel better except send you a big hug thrpugh cyberspace.
I'm just coming out of a bad flare and am due back to work tomorrow after 6 weeks sick leave. I worked myself until I dropped, literally, as I too feel guilty at having to take time off work.
Now the good news - I now feel so much better - and so will you too, just give yourself time to rest and do what your body needs to do to recouperate. I know it's an awful time and I'm thinking of you.
Wen x x
Beverly
This may seem a silly suggestion, but when my hubby had been off work for a while and was frightened of going back, I suggested he start on the Thursday,just so that he had only 2 days to do before the weekend. It helped him greatly not to have to think of working 5 days straight away. A colleague of mine came back from sick and worked every second day for a little while, just to ease herself back in.
Could you consider some kind of phased return?
Kathyx
Thank you Kathy,
I'm not sure how feasible a staged comeback is because of school insurance, however your idea of going back in at the end of the week to ease in is a great idea. I may well do that.
Beverley