Long time no see. I realise I disappeared off the radar for a while. I foolishly felt, after being in a big, dark pit for so long, that i had finally managed to climb out for good.
I managed to get my eldest son in to supported accommodation, relieving that stress of living with a schizophrenic 24hrs a day, my middle son’s JIA got under control with help of a lovely doctor in Gloucestershire, and I finally managed to re-enter the world of work, which relieved some of the financial pressure. I was even getting to the point where I thought I might have a chance to sort my own physical niggles out (hip been playing up for a few years)
Then bang - out of nowhere - last September baby son (well, not baby, 14), got hit with JIA too. I convinced myself i could do this. I got work as onside as I could (had to take a month off in January whilst youngest was in hospital in London), got myself a counsellor so I had some support and nagged doctor for physio for my hip, and I’ve been juggling work/caring/myself like a lunatic for these last few months.
However, today I have got up and I just can’t do it any longer. I feel completely overwhelmed and shattered by the fact that this caring malarkey is never ending. As soon as child one is sorted, another flairs up. My marking load is building up and building up (I am a teacher), both my JIA boys are suffering in different ways and have hospital appointments in the next week, youngest one is refusing to go to school, older one is on reduced responsibilities at this apprenticeship due to flair, schizophrenic one has just finished college and has got himself bogged down in a very strange and stressful relationship affecting his mental health, and I am still waiting for an “emergency” appointment with a rheumatologist (requested in early May), which i have been promised next week, but will probably be cancelled again.
It just all seems so desperately futile. Am i an idiot for believing I can work, look after 3 poorly teens, and look after myself?
Hello Stephanie
Welcome back!
Far from an idiot. A lovely lady who is doing her very best in difficult circumstances, and its caught up with you. I hope you get your note from the doctor, and take some time to look after yourself.
On the contrary, trying to do it all is optimistic and positive. The reality may be challenging at times however.
And I think we carers often suddenly feel down when the pressure eases for a while, it’s like only then does our body tell us we’ve been doing too much.
I don’t know much about the younger boys condition, how long do flare ups last?
Could part time working be a midway option?
And all my teacher friends are saying this is a particularly long and stressful term
Oh, Steph, that’s a lot to be juggling no wonder you feel as you do.
Do you arthritis in your hip?
Can number 3 son see the same Dr who helped son number 2? Great re supported accommodation for son 1. Has he got plans now he has finished college, to keep the routine, structure and purpose in his life? Let’s hope the troublesome relationship fizzles out.
S is moaning in the bath, better investigate, not down all my chores yet either.
Son 3 is under the care of Great Ormond Street, and son 2 is at UCLH due to age difference, although they do work together and are the top centres in the country for dealing with this horrid condition, so no doubt they will get on top of them as soon as they can, its just a bug*er to get under control once it starts rampaging. JIA is such an unpredictable beast, and unfortunately both boys have the worst kind, as it is already attacking their spines and hips, as well as feet and knees. I remember it took 4 years with son 2 to get in under control initially, so guess we are in a for long haul again with number 3. And number 2 was only stable for 18 months before it kicked off again (although he refused the mtx/chemo part of the treatment, so that is probably a major factor).
My hip is most likely arthritis according to GP and physio, hence my rheumy appointment. Stiffness and pain is there all day now, and my muscles are paying the price for overcompensating, and it has en playing havoc with my sleep, so all in all we are in the wars with joints at the moment.
Son 1 is in that horrible period of waiting for results for uni, so no real current plan for routine and stability for the next 8 weeks. I can see the trouble brewing a mile off
Glad I took the plunge to reconnect here and see the GP today, otherwise I dread to think how swamped I would be feeling. Now I can at least take a breath and try to get my head straight, rather than pinging from one problem to the next.
Hi Steph,
good that the consultants network - hope they work out the best course of treatment quickly,
Waiting for results - difficult for anyone, but especially for someone with additional challenges. Has he got a good network of support and strategies to get himself through this unsettling time?
Constant pain makes it harder to cope. Do you suspect RA? I have OA and had one hip replaced age 30 the other resurfaced mid 40’s (born with hip problems.) I preferred hydro to physio prior to my ops. I also found massage helped the muscles that were aching due to compensating.
Think you made the right decision re taking time off, self preservation is essential.
