Doing things for the last time

LignumVitae

There's a poem about looking after children which talks about how they grow up so fast that you miss the last time you do things for them and only realise it has gone when you look back and think how you haven't done it for a while - the bit I always remember is how you will sing a song (a favourite in our house) with all the actions and then you will never sing it again because they won't ask you to.

I just had a very useful meeting about my options for working. It was good and they are going to recommend things that help. It's also left me teary - one of those things that brings reality home to you I guess. After talking me around from my ignorant and pig headed refusal, the lovely chap explained that he really did think voice activated software was the way forward because there was no aid out there that could return me to the touch type queen status I used to hold. That I probably would be best working from home where possible because no matter how you try to work it - the commute is a killer and the office desk and chair situation hurts and will hurt regardless of any options in his catalogue. I know I had arthritis 12 months ago and I know it affected all things in all ways but I didn't realise how well I managed and how much things have changed in such a short period...or that no matter what drugs I take and what aids I have the old me has gone and I didn't truly notice or acknowledge she had left. I rushed out of the house with my coffee in hand hastily picking tunes to listen to for the last time as a regular and seasoned commuter for the last time last year, I typed my last long report on an impossible deadline and pulled it off with no spelling mistakes for the last time, I took my last train journey with colleagues discussing our strategy for the tricky meeting or workshop for the last time and I didn't even realise it. I know you are all probably thinking surely I knew that and I guess a bit of me did but maybe I needed that meeting to admit it and now I need to gently sup a brew and come to terms with it and emerge into all the things I can do and all the first times that are to come.

LignumVitae

It was an access to work assessment and the song was the Wheels on the Bus - something in my originaly post was bizarrely marked as spam. I couldn't work out what, I had put an alternative that ends in 'minded' to pig headed, maybe it was that...but it still isn't really spam worthy and isn't a word which is inevitably only profane.

stickywicket

No, I didn't think 'surely she knew' because I know you are an inveterate optimist, you concentrate on the positives not the negatives so I'm sure, when you did all these things for the last time, you were thinking of all the good things to come. And that is why you handle arthritis so well and always will.

You have lost a lot. It has just been hammered home to you and the loss has to be acknowledged and mourned. After a decent, helpful period of mourning you will haul yourself out of the slough of despond and dare the next challenge to take you on.

It's not a choice between carrying on regardless or letting the disease dictate our lives. It's just a series of ongoing choices – letting go and taking up and being ourselves regardless.

You will sing the songs again because your grandchildren will not only love them every bit as much as your children but they'll love them even more because 'Mummy used to do this with me.' My 5 yr old grandson's current favourite question is 'Tell me about the naughty things Daddy did when he was little' - so keep a list

theresak

I think once you come to terms with what you've lost, LV, the optimist that you are will come to the surface and embrace the changes you have to make, and the 'first times' that are still to come your way. You are still you, and you are definitely not one to shirk a challenge.

I can empathise with Sticky re the grandchildren - they LOVE to hear what naughty things Daddy did when he was little, and often say ' is it true that Daddy did/did n't do this, that or the other? '

dibdab

I'm glad you had a positive meeting with some one who could help you talk things through, sometimes it takes a stranger to see our lives through different eyes and help us understand the new realities. I guess in life we lose things all the time with out really noticing them going, and new kinds of reality clicks in and we learn to value that too with time. You are an incredibly strong and positive lady, and I am sure that you will find all kinds of positive things to rejoice in when you get to grips with this new reality, but for now I just wanted to send some hugs ((((( ))))), and say that the best way forward in the short term is to indulge in wonderful twin hugs (I often wish mine were still small enough to steal a cuddle when life threatens to overwhelm :? ).

I had to resort to voice activated soft ware before giving up work, and whilst it takes a little training it does make life easier eventually. And for me working from home is a bonus, comfy chairs, no drafty commutes and all the stress they bring, and tea on demand! I really hope that you now get all the understanding and support you need from your boss to allow you to make this next life journey step happen smoothly.

Deb xx

villier

((((())))) You must be one of the most positive people on here LV and once you get your head round about things you will cope and embrace the changes in the way you always do. As for the girls there is always new songs to learn and sing and the old ones stored in the archives as Sticky says for the grandkids. You are what you are and Arthritis will never change the lovely person that you are. xx

Boomer13

Awww LV, I think this can be the hardest thing. I remember last year thinking about all the things I did for the last time and not realizing it was the last time. I plunged into a horrendous depression and once back out of it, I think I struggle along with my small daily accomplishments and try to be satisfied with them. I try not to focus so much on what I can't do anymore because I am so afraid of another bout of that depression.

I'm not sure what my point is other than to say I really empathize with you, have been thinking of you, and your other recent post which is very relevant to my own life except I was a contract worker when I was getting sick and just found my career over one day.

Take care of yourself.

Anna

Slosh

LV, it must have been tough for you, I know how hard you have and are working, and the horrible feeling when you have face the fact that how ever much you want to work, are good at your job or enjoy it, you have to face the fact you can't go back to the old ways of working no matter how hard you try, or how much you want it.

I must admit it does make sens to work from home if you can especially if you have a long commute, I'm lucky in that mine is only 15-20 minutes.

Dragon software has really made a difference to me, one thing I would suggest is that you make sure you have training for it, I had 4 half-days which I spread over a month, it was 1:1 and as well as going at my pace was personalised to set up controls that suited me.

I also have to agree about Grandchildren, though I know it's a long way off for you! My daughter also kept some of her favourite books from her childhood and now enjoys reading them to her boys. I had problems having my daughter and knew I wouldn't have another, a friend once said to me that she could see how I tried to make memories for my daughter and for myself to look back on.

Cry it out, talk it out, hug it out and then take it one day at a time. I'm sure once you are over the shock of this you will appreciate that although unwelcome news it does take pressure to return to work in an office off you and that can only be for the good.

Have some East London hugs! ((((()))))

dreamdaisy

I echo everyone else's wise words, sometimes it does take the outside view to show us how things really are. I was fortunate in that when things worsened for me I was able to work from home, and did so for years. Trust me, the 'commute' is fabulous, being able to tailor things to suit me and no-one else is a luxury (which still continues to this day!) and not getting involved in 'office politics' is a breath of fresh air.

It is a huge change to how you will live but it is for the best: imagine not being able to work at all, which has happened to far too many on here. Your limited energy will be spared all the extra hassle of getting to work, I can picture you sauntering along your hall in your slippers, coffee in hand to the 'work room' and sitting down with energy to spare. PJs my also be worn. DD

LignumVitae

Thank you all. You are all, as usual very kind and very right. Boomer, I am so sorry that your changing work circumstances were so drastic, that must have been a very bitter pill to swallow alongside the rest of the bitter arthritis pill swallowing (metaphorical and actual) that we have to contend with (((((())))))

I've had a bit of time to come to terms with it all and actually, this is a huge opportunity - not just to reassess how I work and find a way forward - because that is what it is - a way forward, to the new rather than a return to the old. My boss wasn't so keen on the working from home aspect but then as we chatted he analysed it outloud (as some men do) and soon came around to it being a natural progression for me and something my role and company allow.

The pluses are: working in a comfy atmosphere and not feeling awkward working in a way that suits me (lots of little breaks) as I may in an office; having a bit of space and distance which means I will find it easier to assert myself in terms of saying yes or no to things; not having to work alongside lots of coughs and colds; avoiding the stench of unwashed male which often adorns my office; not having to deal with the health hazard of a brewing area or feel obliged to clean up the mess of others; no cold and wet commute (also saving money on that and lunches); extra time in bed in the morning and resting after work

In a wider way I realised this gives me permission to relax a bit with myself - recently I have been questioning if I was lazy because I am not as active as I was. Illogical yes, much. I seem to have this inner argument and actually, if my circumstances for work can have been altered by arthritis then it is both understandable and acceptable for them to have altered in other areas of my life. I can still set myself challenges but I can also be a bit kinder on myself. What luxury is acceptance?!

LignumVitae

PS DIbdab - many twin hugs were enjoyed in the making of my new approach! We had a stand off last night which at bedtime involved me being covered in twins at milk time both refusing to cuddle their daddy because they wanted to cuddle with mummy. I half heartedly pretended this was an issue

stickywicket

I told you so In the old pseudo-Chinese crisis / opportunity thingy, you will always be a person who has lots of opportunities. And deservedly so. And sticky kisses too

dibdab

Oh LV, I well remember the adherent twin times, and a slightly forlorn dad offering cuddles. As they grew up they and went to school they told me every thing they had done, and barely managed to tell dad anything, as if having poured it out that was it put away by the time dad got home from work. And now at 29 they still ring me, often on their way home from work , to spill out the joys and frustrations of their day (we call it walking home with mum even when they are on a train or hands free in a car!).....it's one of the things I'm missing badly whilst our son is working in New Zealand...but happily I've got 3 weeks to look forward to when my daughter and I visit him in mid February.

I'm so glad you've reached a place of resolution, and it will be so much better for you than struggling in an office, work at your pace in your place and twin cuddles on tap.....maybe you could give them a cuddle on my behalf, it's the best feeling in the world.

Deb xx

barbara12

LV it must be such a strange feeling, I had retired when arthritis came along..like someone else said you are a very positive person..and there will be many new and last time things to come...PS I love how the twins covered you in cuddles..that is what children do after they have worn you out..lift you back up again... wishing you well for the future ...xx

Boomer13

LignumVitae wrote:

The pluses are: working in a comfy atmosphere and not feeling awkward working in a way that suits me (lots of little breaks) as I may in an office; having a bit of space and distance which means I will find it easier to assert myself in terms of saying yes or no to things; not having to work alongside lots of coughs and colds; avoiding the stench of unwashed male which often adorns my office; not having to deal with the health hazard of a brewing area or feel obliged to clean up the mess of others; no cold and wet commute (also saving money on that and lunches); extra time in bed in the morning and resting after work

As much as it has been horrible to lose my career, I was so stressed when I was working and trying to cope (and realising I wasn't), I was having to stop my car on the way to work in the morning to throw up, I was that anxious. All the small things you mention above can add up to a lot of extra stress. I can admit now that I just can't handle a lot of it. Your health is more important than any job.

As much as I would like to have some kind of job again one day, I think I'm aware of my limits and realise they are my own and I don't need to try so hard to measure up to some external standard, if that makes sense. Now I work hard at defending my limits because it's not worth making my bad problems worse!

Good luck, I hope you can find a solution that eases stress for you and that your boss can live with. It's not easy.

LignumVitae

Anna - I recognised so many of the things you wrote. I wasn't being sick every morning but I was in a state of perpetual anxiety because I wasn't coping or admitting that I was struggling when things started to go wrong. It was so exhausting and when I finally did give in, it was like a release. I think working at home helps me to keep perspective on 'my' struggle rather than trying to keep up with colleagure. Plus, when I am not in direct contact with those who would wish to jump into my job, I don't feel them breathing down my neck so hard or at least I don't care about it so much. My boss was a bit iffy about the home working at first but soon came around when he realised the alternative was me using the speaking software in the corner of the office whilst others tried to work, teleconference or take calls! It's about minus five outside this morning, brilliant blue skies, snow all around. I'm sitting with a cup of hot vimto, next to a fire with coals still glowing from last night, I am comfy and productive. No doubt the trains were running late because of the weather this morning and I would have ended up doing an extended platform stand followed by an extra squished commute which would have required a rest at my desk before I could start working...win all around with me being here. That said, I am still having a few pangs, it is early days for getting used to being at home more as a permanent thing and just seeing less people. I am trying to find new routines and ways forward - I have my warm boots on rather than slippers, I have earrings in. Little things but hopefully they will stop me from becoming totally feral and stuck in my little den!

stickywicket

So, your glass is half full (of hot Vimto) . I'm not surprised but I am pleased. It's good of the weather to ease you into your new routine but it takes the right sort of vision to see it. I hope there will be occasions when you can – voluntarily – join your fellow-workers. And maybe see what you're not missing

Slosh

Well done you. It probably helps that you don't have to go out in the cold, and longer term, just think, no office politics!

Boomer13

I do really hope your new routine works out for you. The small things like dressing with shoes and earrings, etc also make me like I'm officially "up" and not just loafing ! I would like to have a small working project at home too. Maybe I'll find one eventually! I've made a work routine for my household chores so I have some structure to the day. It's a small thing but it helps me feel like I'm accomplishing something daily. Every little thing helps! I certainly feel mostly like I live in an entirely different world from my old peers. It's very strange.

I really agree that you need to rest upon arriving at work, the travel part I always found really exhausting. I felt sooooo inadequate when I arrived grumpy and tired at the start of the day. It was a relief when I learned that was due to a medical problem and not some failure in life management on my part. I've had the fatigue part of the illness much longer than the pain and it always made me feel like I had to try twice as hard as everyone else. I really don't miss the competitive part of the office environment you describe. Silly isn't it?

Best wishes LV ((()))

PS I think I've finally found some peace with the concept of having done some things for the last time. It took many tries and much pain to finally acknowledge that the effort wasn't worth all the pain and lengthy recovery. I'm much more sensible now and realise that if I go off and get exhausted doing something it impacts my husband negatively when it takes days to recover. I was a slow learner in this regard, but I think I get it now. I still miss things though, like a great long hike in the mountains!