I'd like to open a discussion about how people with RA managed their professional life.
In my case, I've a demanding job and I start to wounder for how long I'll be able to co-op with my life at work, that is where I spend most of my time.
I've to wake up every morning at 4:30am or 5:30am in order to get as much money as I need to cover up all my expenses.
Therefore, I describe a normal working day: As I mentioned above I get up 4:30am, have a light breakfast, not because I'm hungry but I have to intake 5 strong tablets.
Then I drive for 45/50 minutes to work where I swap my coat for the uniform jacket and tied up my hair. I have to sign in and be ready in my position at least 15 minutes before 7:30am and work in pain, terrible pain. Then around 9:30am I'll go to my position for the rest of the day until 5:45pm, where I work with CCTV/PSS and public. My company is very demanding in time and performance.
I feel quite sad because I work with them for many years, I have higher qualifications and experience then 80% of my colleagues, but they don't give me a promotion because my disability. As my manager said to me once, I must bear in mind that I'm the last on his list, always and no matter my very high standards as a professional. I trained most of them. It is so unfair and revolting indeed, but is the reality. Sometimes, I wish to leave, tell them that they can do, just because my manager doesn't know to perform doing my job. Is a very old arrogant ex-military man. He thinks that we are a continuation of the army. Disgraceful.
Is a very stressful job and by the end of the day I've spent all my strength, then drive home, or sometimes I have to stop on my way to buy some bread, milk, etc, nothing too much because I wouldn't be able to carry the bag.
My son meet me at the car, when I park of course and carry the bag for me. To be noted that my son does everything for me related with house chores. As well is the one that every morning wake up as well to do the lace of my uniform shoes.
He cooks, a good cook indeed, shame that most of the time I don't even have the strength to eat, so I just eat a piece of fruit because I have to intake 8 strong tablets.
All these happen Tuesday to Saturday (always) then I'm off Sunday and Monday.
On Sunday I have to get up around 6:00am because I cannot to be in bed for much longer as pain is so intense, but I'm so exhausted, so I'll have the breakfast, medication and seat on a chair in the living room and sometimes I sleep for another 2 hours and that's it, the position start to cause intense pain as well.
When I can I'll drive somewhere nice and have a family day. I cannot walk as much as my son and his girlfriend but we are all happy to leave me with a book and they can go for a longer walk.
Then, drive home, have something to eat, intake my Methotrexate and fall a sleep on the chair. Every three weeks I need get up early on a Monday because my blood tests and the fourth I have to see my GP.
I'm always in pain, intense pain in every single joint, plus the problem with my L5 that makes my life a misery.
Sometimes I feel lonely even within my family, as I would love to share my life with a friend, companion, lover, but I realized that is not possible.
Since I was diagnose with severe RA in 2006 I had had two partners that at some point left me because they couldn't imagine themselves in the future to be carers of a partner. So, yes I let them go as easy as they come and I would never take any back after their words and even more actions.
I'm happy alone, I'm independent, have a job, a car and at the moment look for a flat in fact. Well, if someone know about a flat in London, affordable of course, it would be very nice. I need two bedrooms because my son and his girlfriend don't want me to be alone.
Of course that one day they will be able and ready to follow their own steps and I believe they must. I'll be happy if they are not going too far, as will be nice that one day when I'll become a grandmother to be able to reach my grandchildren in a easy drive.
I wish to be a grandmother, but not yet, first I want that my four children, my two sons and respective fiances to achieve a successful life, very happy as they are now and enjoy the time for each other and then kids will come in good time for me to spoil of course.
I just like to ask, what do you really think about my little life and how's yours.
Are you discriminated at work. How do you co-op.
Please share and if any good advise, it will be taken with much consideration.
However, I strongly believe that most of us with RA are very strong people.
What you think?
Be well and keep smiling, as I discover that smiling confuses people. I think is because they forgot how to do it.
I'll be back soon to see your reaction.
Best wishes to all, from my heart.