I am pretty much adjusted to my new situation now. After a couple of years of feeling pretty much rubbish I now know to make the best of it. Every now and again though, I get that niggling feeling that I miss what I call my ‘old life’. My ‘old life’ refers to life before RA. This was the life where I was successful in my job and starting out on my career, socialising with friends on endless nights out drinking like there’s no tomorrow and doing pretty much whatever I felt like. That life isn’t possible anymore. I don’t get the freedom, majority of the time, to do what I please. My career feels like it’s disappeared into the distance, especially with the nonexistent job offers coming in. I can’t drink like there’s no tomorrow, not that I even feel like it or would be able to handle the aftermath anymore. And I can’t shop till my arms fall off because government benefits don’t quite allow a shopping addiction to flourish.
The feeling generally occurs when I am bored, which at the moment is pretty much every waking moment. I have the odd thing to do with my fundraising, writing, seeing friends etc but the structure and routine of having a job and separate ‘free’ time is really lacking in my life. I miss having a purpose to get out of bed in the morning more so than ever. I hate those limbo days where I don’t really know what to do with myself. I like to be a busy bee and in my previous life was always on the go. I get bored very easily and as I am currently waking up at about 6am every day, there are a lot of hours to fill. I don’t really know how to solve the situation other than to wait for a job to come along. (I don’t expect one to fall out of the sky and I am applying for things constantly). It is frustrating and upsetting that I have had no responses from my applications at present. I wonder if it’s because of the massive gap in my CV from when I had to leave my last job? Maybe they think something is wrong with me. I ponder over the equal opportunities questions on applications, you know where it asks if you consider yourself to have a disability?
Now, if I answer yes, is it likely to affect their decision? Or if I answer no and then explain my condition at a later stage will I be classed as a liar for not declaring it sooner? Decisions... decisions. I find as the days go by I am becoming short fused, angry and irritable even about the smallest things. I am trying my hardest not to take it out on those closest but it’s getting more difficult to mask my worsening mood. I am not sleeping well, which is down to worry about money, not being worthy enough for a job and never getting back into a career I enjoy. Lack of sleep only makes things worse and because I am tired, even when I am bored I don’t have the energy to do anything anyway. Oh the spiral of crap continues.
I am much more comfortable in my ‘new life’ in the respect I am not burning the candle at both ends whilst trying to cope with this illness. I take things easy and don’t feel pressured by anyone to ‘keep up’ but things need to speed up a little before insanity sets in. My adorable cat can only entertain me so much during the day when people are out at work, and I think he’s overworked and underpaid.
Yes. It's tough. I find it very hard to sit down and do nothing which is a real problem as my doctor and therapists keep telling me. I get soooooo frustrated sitting about. It drives me crazy. I also hate having to rely on people to do things for me: open jars, lift a pan, chop food, etc. It drives me bonkers as like you, I am very independent and like to be on the go. And I also feel guilty about having to have people like my husband do extra work to help me out. He works hard enough with having me to deal with too! I don't know what the solution is. But as everyone keeps telling me health has to come first. I long for the days of when I didn't know what RA was. Xxxx
ReplyDeleteYou're so right - it's a vicious circle. Doing too much is impossible but doing too little is actually worse, especially for the mind. Thing is, a lot of people without gaps on their CV are struggling to find work just now so don't get disheartened. It'll just take longer but you will find something. Have you heard of an agency called Remploy? They help people with disabilities back into training and work and one of my friends with RA used them to get back into work and highly recommends them. Think they have offices all over the country, search them on Google...
ReplyDeleteThank you Kerrie for sharing an excerpt from your book which I know you will find a publisher.
ReplyDeleteI felt I was having a chat with myself. And, from this latest post, I have found new inspiration. Thank you, thank you.
Hi have you thought of voluntary work? employers seem to like that on cv's and you never know it could open the door to paid employment. It may help give you some feeling of full fillment doing something and i dont think you would lose your benefits, you dont have to do it full time, a few hours a week even and it would help get you back into work pattern. Best wishes Chris mum and wife to RA sufferers.
ReplyDeleteThank you for your comments... Christine, I actually already do alot of voluntary work as and when I can including fundraising, support and information etc for Arthritis Care and yes it does help with giving me a bit of structure but not the same as having regular work x
ReplyDeleteGod, I could have written this!!! All of it, I feel the exact same way. I'm a bit more fortunate in that I'm older than you, so I feel that I did all the partying and drinking etc. but up until last year I was very active and even taking trapeze (can you believe it?) lessons!!! Now I'm struggling to left a cup! :)
ReplyDeleteI've just discovered your blog and wanted to offer some support. I've had a form of RA since I was 2 and in my life (in my fifties now) I've done some pretty wild things and lived life to the full. I've been a rock star, toured the globe, married, had kids and partied like there was no tomorrow. I've had good jobs and only in the last three or so years have things got worse to the point of having to rely on benefits. All I can say is seize the day, take the pills (or whatever) and live your life as you always wanted to, developing work arounds for the bad days. You obviously have a fine mind so you owe it to yourself to fulfil your potential. If I had listened to those who saw me as somehow fragile I would never have laughed it bloodshot on the streets of Berlin or watched dawn come up over the Gulf of Mexico after a wild night on stage in Galveston. Have strength.
ReplyDelete