Guilt!!

Hi im new to writing a blog on here but would love to ask advice as it seems i cant get through to family and friends. I was diagnosed with RA in feb and used to be a hairdresser, obviously had to give that up and im now out of work, although looking. Only problem is i have no idea what im capable of anymore!! I only ever did hairdressing since leaving school but im feeling guilty about not working. I also feel bad as i come from a family of hard workers, something that i struggle with now, it takes me ages in a morning to get going and if im having a bad day i just hate sitting around while everyone else is doing something around me. Is it just me or does anyone else have trouble adjusting to a more sedate way of life?!? I try explaining to family that im tired but, call me paranoid, they just seem to not listen. If anyone has any ideas or advice id be eternally grateful!

Many Thanks

Maxine

14 Replies

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  • Welcome maxine,you will have to show them some of the blogs on here,then they will see your not paranoid. I know it is hard to come to terms with. I've had ra for about 6/7yrs and in august i was diagnosed with fibromyalgia and thats b""""y painful to. The trouble with the diseases we have is that it can't be seen.

    What pills are you on? i've got a bucketful of pills to take every day just to keep me going and i'm still not pain free. Take your family with you when you have gps/hospital appointments and then see how they can help you. Ask them if they would like to swap with you,i bet they would soon change their minds.

    It will be hard for you to get people to understand what is happening to you. There are plenty of us on here who will keep you going and cheer you up. I'm noy of the people who know more about medicines and procedures in the nhs,i'm just a lady with ra/fibro. I've noticed that in the last year i have deteriated in the last year. You won't find it easy not having to do as much,i still find it hard having to sit and watch my family do my work.

    Hope that you soon feel more brighter,take care

    Sylvia. xx

  • Get your health sorted then have a think of what you would like to do., maybe still something with people? how about something like reception work but in a larger salon?.. I dont know what your interests and talents are but some of these could be a key to a new job in the future?.. part- time is easier but not financially good?,You mustnt let other people judge you, the disease itself is a full time job xx

  • Hi

    I agree with summer consider pt, starting in the afternoon or being a mobile hairdress, so the hrs that suits you, when it suits you.

    That's the hardest part not being able to plan things. I section the house work, but alot of the times I cannot do it, as I have been in alot of pain almost constantly newly diagnoses, August). So my husband has to do it at the wkends and he works full time. I am not (pains gone 90%, still some early morning stiffness), in pain now due to steroids, but I am very tired as I have recently started mtx, I think the steroids make me tired in the evenings and i am ready for bed by 8 now. If I take them to late in the morning, it makes me hyper in the evening, so you can see, there is always a trade off.

    I am still trying to hold down a partime job as a teacher (I work 3 days), so of course when I work I do not do any house work as when I get home I am usually to bushed.

    So to sum up, we are learning to live with some dust, washing gets done on my days of, clean the bits you can see wkend. Detailed cleaning on school hols.

    I hope that helps

    Sci

  • maxine i feel the same as you - i have a lovely family but there appears to be some sort of resistence to the fact that i am not capable of doing what i did prior to this. My mother lives 50 miles away and there is an expectation that i go home very regularly and there is an unspoken criticism if i don't. I work and have managed to keep it up but couldn't if i was a hairdresser and i honestly would dread to tell my siblings and mother and prob my husband if i felt i couldn't do it anymore -, i rarely tell them if i am off sick, i can't bear to tell them.

  • Hello Maxine,

    I'm a hairdresser too!! well was one but like you am now in limbo of sorts, luckily I was given the chance to get my teaching training and have been working as a lecturer for the last 7 years, I have been on maternity leave since last October but was then diagnosed Feb this year. My problem is as you understand is that I am unable to teach practical, I will be going back next week to teach theory only until hopefully things improve enough. My shoulders were hit badly and worry that the damage has been done now, I have responded very well to Enbrel and after taking it for 12 weeks feel tons better, only my hands have swelling and even then not much pain....

    So, my work I think will allow me some time to see if I improve enough to teach practical otherwise I fear I will no longer be able to carry on.

    Sorry, I don't have the answer but like you I am thinking about what I could do, it is going to be very hard to be re-employed again so the alternative is to go self employed (for me anyhow) but goodness knows what!!!

    Some good advice from all above, if I do think of anything I'll let you know and if you could do the same for me?! :)

    A while back I found a case study of a hairdresser in Australia, she responded to treatment (enbrel also) and works full time in a salon, was very happy to read that story.

    As to getting family to understand, thats tricky one, when I realised that methetrexate is a low dose chemo which explains the sickness ect, then I mentioned it to my sister, she suddenly started to understand how serious RA is and the effects of the medications we take (I'm still on that also) maybe it's wrong to mention that but for those close to me I have found better understanding. Gosh I've waffled on, hope things get better for you and would like to hear when they do! :)

  • I would concentrate on getting yourself at a better point in your RA before looking for work, if you can financially that is.

    As for your family, try showing them this butyoudontlooksick.com/arti...

    it worked for most off the people I was having trouble with.

    Take care

    Julie x

  • Hi Maxine, great advice above the only thing I can add is; I've been diagnosed over 20 yr although had problems since childhood, my family still don't fully understand and can't get their head around the fact I look so well ( and they've seen me doubled up and unable to stand straight or walk).

    It's an awful disease because it's hidden and unless people can see the disability they tend not to believe it or doubt it's impact on your life/wellbeing.

    As for work, I was going to suggest the same as someone above, learn to teach!

    Speak to your local collage who will have personal advisor's who will talk to you and find out what skills you have and which course your best suited too. I hope that's the path you take as it can be so rewarding teaching adults who never had the opportunities when younger. Or you could learn new skills altogether and one day set up your own business.

    Another path you may want to consider is; sign up for your local volunteer service and volunteer for admin or reception work. It's a great way to gain new skills and there's training available for volunteers. It could also lead to a new career and work opportunities.

    It can be done, I've had to change my career three times until I eventually had to leave work. But it can be done so stay positive.

    Good luck. xx

  • Hi, my hairdresser was diagnosed 2 years ago and now works Thursdays and Saturdays only having cut down from full time. She is also on morphine patches which apparently help as well. She has only once had to cancel one of my appts in that time when she had a bad flare. She is also diabetic and has two very lively young boys to cope with as well.

    Perhaps worth looking at doing some part time hairdressing? Or go along to your local CAB - they are always looking for volunteers and you do get travelling expenses although no pay. They are a very friendly and supportive bunch as well.

    LavendarLady x

  • Hi, welcome to this great site ! I too was a hairdresser but changed career 8 years ago to work in a school as a teaching assistant, you work shorter day's and get the school holiday's off too , i can cope with this as i now i will have a break every 6 weeks to then catch up with cleaning jobs ! Reception work would also be good for you as you sit down mostly but are still meeting people, hairdressers are very good communicators !

    Take care Karen x

  • Hi Maxine

    Like all comments before you really need to focus on getting the RA under control and just manage best you can financially.

    I am in the same boat. I was diagnosed in March I have ran my own business for 7years and teach yoga, pilates and do all holistic therapies....my hands were my life...my living.

    I cannot do anything at the moment, I have applied for Esa and DLa to try and get me through until I am in a position to even think of work. Regarding family understanding like above mentioned, I emailed my nearest and dearest the spoon theory from butyoudontlooksick.com. it is really good and will help.

    I wish you well and we are all here to listen when you need us.

    Lisa x

  • Hi again, the spoon theory as Lisa says is good, I used this one day but adapted it slightly to explain to my 11 year old son, worked well as it didn't scare him and now if I'm struggling I just mention my lack of 'spoons' to him :)

  • Im sorry for the very late reply, my internet has now decided not to work!! But i am so grateful to you all for taking the time to leave a comment, its been a big help just knowing im not alone, ive been refused DLA and havent applied for ESA on the 'advice' of a disability advisor at the jobcentre,she said it wouldnt be any good as i cant work on ESA unless its approved work, i go to see her once a month but not sure why i bother, we are afterall just another statistic to them. Thankyou for the link to that brilliant website, im printing info off as we speak, i will make them understand!! Its wonderful to know i can come on here, have a good whinge and not get judged for it, youre all a great help, but most of all i can show my friends and family its not me thats being a hypochondriac but it happens to others too.

    Thankyou so much

    Maxine xxx

  • I also wanted to say that reading about the spoon theory actually made me cry! Not a good look when sat at a library computer but it was just a relief!!

  • hi maxine im new on here too diagnosed in sept seeing rhumi 12th i have been off sick from work since august even my personell dosnt understand just says get some wrist supports hence im still off ive been reading things on here and its a brilliant has helped with drugs theymight put me on etc thanks ev1x

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