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Starburst

I promised myself I’d start a masters degree by my 30th earlier this year. The day before my birthday (!) I sent an application for a post grad course funded by my employer. It’s not a masters but it’s a step in the right direction and I got a place. Health permitting, I start in January. I say ‘health permitting’ because, in the middle of this, I got some letters but they weren’t MA or MSc. I was diagnosed with Myasthenia Gravis (MG), another autoimmune disease, this time a neuromuscular one. It’s on the milder end of the spectrum with my eye muscles being predominantly affected. I’m on medication and it works reasonably well but, of course, comes with side effects. I’ve been more fragile, both physically and mentally, since the whole nearly dying thing last summer. :roll: I’ve made a good recovery but it’s taken a toll on my body and as a result, my mind struggles to process things. I really just needed to let this out; it helps to be honest and admit it’s not particularly easy.

“Some days are better, some days are worse. Look for the blessing instead of the curse. Be positive, stay strong, and get enough rest. You can't do it all, but you can do your best.” Doe Zantamata.

dreamdaisy

Sophie my girl, I don't know how you do it. I am so sorry about the latest diagnosis (another member on here, Palo, has MG) but as usual you are rising to the challenge and getting on with life without a trace of self-pity. I am so proud of you, go Sophie (clap clap) go Sophie (clap clap) go Sophie! DD

💋

stickywicket

You are amazing. I'm sure you'll cope with the MG but it's a ****** that you have copped for this too. Of course it's not easy and you are right - it does help to be honest and here is a good place for honesty as we are not your nearest and dearest just good friends anxious to help in the minimal way that we can.

Keep pushing the boundaries and inspiring us, Sophie. That helps all of us.

Starburst

Thank you both for your kind and generous words. I feel totally undeserving. I’m having a double disease flare up and have been of work for a few days. I feel guilty because I’m letting everyone down; vulnerable service users are not having their needs met and it puts pressure on my colleagues. I think I’d beat myself up less if it was a one-off but I’ve had a lot of sick leave. I’m not a reliable social worker and I’m not a reliable colleague but what hurts the most is that I’m not a reliable person.

dreamdaisy

Ah excuse me????? (I've had to do something I loathe to express the extent of my surprise).

YOU are a very reliable person, it's your health which is not. Many people facing what you face would have given up long before and be sitting there doing nothing (that's assuming they'd even started doing something in the first place). You set a fine example, young lady, I have no doubt that at times it is exceedingly hard for you to do what you do but to describe yourself as unreliable is really not on. DD

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stickywicket

You are a very reliable person. I read every thread you post knowing that I can rely on you for common sense, honesty, compassion, 'unselfpitifulness'. We all need more of these qualities not less.

I do know what you mean though. I've just had about a month off what with being in hospital and still trying to get into a normal rhythm of unzonked like. I know that others have taken up the slack for me, both at home (cooking, cleaning etc) and in the small amount of voluntary work I do and, of course, the others are exceptionally busy people because, just like you, they are the reliable ones. But still I don't want to say I'm back until I can be sure I won't be sending in my apologies in a week or two weeks because I overestimated.

It's not my fault any more than it's yours. You wouldn't even feel like this if you were unreliable because you wouldn't care. You do care and that's why it hurts. There are a lot of things wrong with our care system but you are, emphatically, not one of them. They are lucky to have you. And so are we.

Starburst

Sorry for being a bit of a grump. I’m not coping well on high dose prednisolone. I hope my next neurology appointment will find some solutions that don’t involve steroids. :roll: I started etanercept this week also so fingers crossed that’ll kick the RA into touch.

I keep reminding myself I’ve been through worse and I can get through this. I’m resting when I can. Breathe, breathe, breathe.

I appreciate your help and support, as always. Thank you.

stickywicket

You are NOT A GRUMP. We're going to come to blows at this rate That'd be fun. Who would be the first to land a straight one with any force behind it

You're going through a rough time. Just one on top of many more. And, as you say, you'll get over it but you are entitled to a little dip in the slough of despond. Sometimes it just gets too much even for the best of us. And you are definitely in that category.

I do hope the etanercept helps.

Keep talking to us, Sophie. It's sharing, not grumbling. If you wish I could give you lessons in the latter

GraceB

Hi,

I also wanted to say that I find your posts on this forum very thought provoking. You are always one of the first to offer support to those who need it.

Tackle each day as it comes. If you need to break a task down into 3 or 4 stages in order to achieve it, what does that matter? You are a hard-working, very inspiring person. And I'm sure your colleagues at work realise that. Your clients are very lucky to have you supporting them. (I'm also aware as I work in Social Services) that there will be systems in place to support your clients effectively whilst you are off so please stop worrying). When you are better and return to work your clients will, rightly, be delighted to see you back.

Congratulations for being accepted onto your degree course.

Just take care of yourself for now. And above all keep smiling!

GraceB

barbara12

Hi Sophie
I have always admired you , and I am sure you will do well, you certainly have the right frame of mind..and dont forget we are here to listen to your little grumbles especially if it helps..wishing you well with everything..x

dreamdaisy

High-dose pred is not fun, I count myself fortunate that I have never taken anything above 20mgs but am aware that the big doses are unpleasant in what they can do. How are things going for you now? I hope there has been an improvement. DD

Starburst

I really appreciate your words of kindness. It makes a huge difference to me. I was taken off the high dose. My new - amazing - neurologist said it’s “very dangerous” :shock: to put MG patients on high doses, you need to titrate up slowly. I suspect that was contributing to my physical decline which didn’t help my mental health. I’m much better off the steroids because I’m sleeping normally and my MG meds have been adjusted. I’m struggling with side effects but they’re manageable. Rheum and neuro are going to decide about long term steroids but probably a low dose. I’m pleased they’re going to be working together and hopefully we can put a plan in place to safely control both conditions.

I went back to work on Monday, did 5 hours and I did 6 yesterday. Today is my day off and then I’m back to normal. I am tired but taking it easy. I’ll probaly work from home more than I’d like. I prefer to be in the office with my colleagues but I know the driving with zap a lot of energy, so I’m trying to be cautious.

To be honest, I am struggling a lot to deal with everything. I’m starting my post grad course in January and I’m determined not to postpone. It was already postponed due to my health as I was meant to start in September. In my head, I am ready for all of this but my body is much more reluctant. I am trying to balance it all up. My social life has taken a hit and I’d like to go on holiday again but these will come, in time. I am prioritising spending time with my gorgeous one year old nephew, my job and my course. I do see my friends but I need time to rest. Luckily, I have great friends who understand and join me sitting on the sofa, watching TV and eating snacks.

I’ve rambled on, as per usual. I have good days and bad days. That’s life. I’ll be ok, I’m usually always ok, it just takes me time. I need to have more patience with myself and give myself the same kindness I give my service users. Easier said than done!

dibdab

Soph you are amazing, you're tackling more than your share of long term disease whilst doing an incredibly important and demanding job, never mind starting another course. Be gentle with yourself, perhaps aim to spread your course over a longer time period.

You are most certainly not unreliable in any way, and by dealing with all you do you bring a different kind of empathy and understanding to those in the greatest need of support. Probably more empathy than many of your colleagues can have because they don't endure the dark days in the way that you do.

It's good that your different consultants are working together to sort the best programme of meds out.

Deb x

stickywicket

It's odd but true that having people who understand one's condition at first hand being encouraging and complimentary does help much more than the well-intended solecisms from those who don't.

I'm pleased your consultants are liaising. That, too, is of enormous help.

Yes, you will miss the people and the banter if you work more from home but I guess sometimes these things just have to be done in order to achieve the main objective.

You sound to have good, understanding friends and that, too, is vital. And not to be taken for granted when one is young. By the time you reach my age all your friends will be glad of a sit down and rest evening but that normally comes only slowly. Of course, your nephew will understand nothing. You can do everything in his eyes and he won't make any allowances for you and that is wonderful And scary

If you feel you need to postpone your course again don't feel you've failed. On the contrary, you achieve so much just routinely. I'm sure you'll continue to make good decisions whatever they are.

Good days and bad days? Yes, the sheer unpredictability in a world which demands consistency, is so hard to live with. You certainly do need to be patient and kind with yourself. You deserve it so much. t115006 t115006 t115006

Starburst

You’re both too kind, I am blushing a little. I’ve had a funny old week and finally, made the difficult decision to defer entry on the post grad course. Initially, it felt horrible but now I feel a bit lighter and a sense of relief. That said, I do find it a kick in a teeth when I see people with less experience overtaking me career-wise. In my organisation, we are encouraged to progress up the ladder and it’s hard to see friends and colleagues climbing much quicker than me. I was reminded of a quote (Josh Shipp); “You either get bitter or you get better. You either take what’s been dealt to you and allow it to make you a better person or you allow it to tear you down. The choice does not belong to fate, it belongs to you.“ With that, I choose to accept the hand I have been dealt and I am now off to bed because I am done! Goodnight x