Today I am grumpy. I can't hide it, I'm snappy and not nice to be around. Even though I'm angry with RA, it's my family that are feeling the fallout.
I know I'm being tough on myself but I hate not being able to be 'normal'. My boys would argue that I've never been 'normal' but you know what I mean. I have managed 2 weeks in my new job (which I like) but it has totally caught up with me this weekend. I'm even upset that I can't do the housework and shopping and I hate housework and shopping!
The logical part of my brain (it has been argued that I don't have this part) is saying calm down, relax, think about what a rollercoaster of 2 weeks this has been. The emotional part of my brain (which is the majority of it) is saying words which I can't possibly repeat on here. Even the pets take one quick look at me and head the other way as they can feel the vibes
Apart from the new job, my 17 year old had major knee surgery 7 days ago and is immobile and reliant on me for emotional, mental & physical support. He has Asperger's Syndrome so any change impacts him really hard and requires lots of reassurance and attention. I've also had to battle the local authority and find a solicitor as they have been trying to withdraw the funding for his specialist placement.
To round off the week, I got a call from my Rheumatologist yesterday, calling me in on Monday as they want to take another biopsy of the synovial lining of my wrist (it's a research thing) and begin the process of escalating my treatment to Anti-TNF's. I knew this was coming but it still kind of hit me like a ton of bricks. I've managed to schedule the appointment for the afternoon so I can still go to work in the morning (I'm still on probation at new job & they don't know I have RA.)
Sorry for the rant but I'm having a wallow in the 'self-pity pool' today and just needed to get that off my chest.
Morning dont appologise for the rant. We all need to some days. When I am in that kind of mood I hate myself too. From all you have had on lately I think you are a fully paid up member of the "Entitled to Moan Club". Glad your job is going well hope you can soon come clean about your RA. But as you say you are on probation at the moment so "Mums the word". I went out last night with my friends and had a dance so am cream crackered today. It as worth it though.
Ann, Ann, Ann, cool it.... sorry that probably wound you up even more. You sound so frustrated and in need of a little succour yourself... It's good you got it off your chest. Sod the housework, I know you want to do it, but no=one is going to die if you don't, I know you know I know you know that. Delegate? Glad the new job is going well, and it sounds like you are anxious to give the right impression, of course you do... please don't be too hard on yourself. I don't know how you are doing it. A friend of mine was telling me last night, his son who is Austic has just been told he can't go into the "special" side of the college he was hoping to go to because of the cut backs, and he knows his son won't be able to cope in the other side of the college because he just can't stand too much going on around him and needs peace and quiet, when he really does excel. It is such a bummer.
You must be exhausted just try and rest and recouperate and I know exactly what you mean about the animals, my dog always knew I was in a bad mood before I did?? She was a clever old cocker spaniel mind you... Lol... Look after yourself Julie x
Hi Ann, I feel for you as you probably don't know if your coming or going at the moment. We always take it out on the one's we love it's the way life is unfortunately, crap! I know.
It's difficult to tell yourself to calm down but you have to try and sit down take a deep breath and think about the things that matter, and housework doesn't when you feel this way. Do the things that are important to you but most of all take care of you!
Trying to over do it will make things worse your not super woman I only wish you were. Good on you for keeping down a job, mind you these days you probably don't have much choice.
My niece called me the other day telling me about her son who as aperger's, he goes to a special school and as been doing so well he was allowed to go to the local secondary one day a week to do a GCSE lower level. This was working out much better than they expected, but now the funding as been cut he can't go anymore.
Take care of yourself Ann, just come and talk to us we understand.
mand xx
mmm was thinkimg murderous thoughts last night... evil diseaes,, cruel consilt.. dint they think we have problems......, on another note was reading the two blogs above me in this blog.. oh brain fog too.., is there a genetic code.. link between autism. and Ra as 2 ladies have autism./ aspergers in the family as well as ra.. is there any link... does any one know?
Oh I feel so much empathy for your position as I can identify with it sooo much.
I am trying to hold a P/T job down and find it really difficult. Only do it by sleeping on my days off. As I always say on this site ( like a broken record ) we are all individuals so every person has to find best way of managing the Ra so it doesnt manage you!! Thats my philosophy and im going keep fighting back.
Probably changes over time with our changing needs. I was diagnosed with RA in OCtober too and recently cos of mindblowing exhaustion and other symptoms of RA I have started to rebuild my identity and sense of who I am.. It has started with having to accept that I can no longer do what I used to be able to do before diagnosis. I am a qualified Social worker and one of My friends works in an adult care team and a water shed moment came when she said to me that I was going through a transitional period whereby i was coming to terms with the fact I was now disabled.
Initially I rejected this concept but having looked up the meaning of disabled ie having a chronic and substantial disability or health condition which impacts on your ability to carry out day to day activities- I now consider myself disabled by my level of RA. Its not only you that has to adjust to this its your loved ones and friends too.
As a result I am now looking at ways that I can manage the symptoms. I am slowly making positive changes and dont feel so guilty about leaving housework and have talked alot to my family about the problems and we have come up with a rota to do stuff.
Luckily my boys are 17 and 21. we have accepted having micro wave meals on the days that I work and I cook the others days. My hubbie carries the washing down.
Its not easy I know and we have had lots of rows to get here but just lately it has got better and I feel a bit more like " Well if I cant stop it ( the RA) Il just have to find as many ways as I can to work around it "
Have any others who have lived with RA a long time found that accepting your limits helps ? Think NRAS has a great leaflet called beyond Tiredness if Im correct.
God bless Anne remember its a process you will get there in your own way to suit you and those closest too you
xxx
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Hi sparkle,I have to say that after reading some of your blogs/comments that you have learned so much about life with RA. Things that some people take years to come to terms with, so just wanted to say well done and so glad your still on the site blogging and commenting, your positive attitude towards RA will help so many others.
Take care
mand xx
Sorry forgot to say if Im on steroids( am on those as well as moment) I am a NIGHTMARE... my family say I suffer from more than grumpiness more like ROYD RAGE ARGHHHHH ........... my husband has just removed an axe out of his crash helmet............( which he wears when im on steriods and /or on due on.......)
I'm afraid having a rant about not being 'normal' is normal for this rotten disease! But seriously, you have a HECK of a lot going on all at once - it's no wonder it gets to you - it would get to anyone. At least that logical part of your brain is niggling away there and it will eventually get through, I'm sure ...
Good luck with the job, I hope things sort out with your son and don't forget - if the research thing starts to get in the way of your job and your life, even though I'm sure you're doing it for the good of all us, you don't HAVE to do it! And as to the anti-TNFs, let's hope they get you on them quickly and they work like a charm, and then a lot of your troubles will melt away! Everything crossed for you.
Ann-- Thinking of you. How do we find space for RA in our busy busy lives? I went full speed for a week and a super busy weekend on top, and now have the consequences of a bad cold (thanks Mx) and a flare up on top of it. We can only do what we can do. Just take a deep breath and do only what you can do. That's all your family needs. They feel the love more than the task anyway.
Just wanted to thank everyone who commented on my Grumpy post. I am really grateful for all the support and advice.
I did 'crash & burn' over the weekend but it was what I needed to do. Feel so much better for accepting the need to slow down, calm down & rest and not waste my time fighting with myself!
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Still fighting the nhs regarding work problems
Fatigue and depression
Working and disability allowance in uk
How to handle a woman in flare up mode!!!
Emotional rollercoaster :-((
