Well I have had a bit of a nightmare of a week! The only good thing is that scotland has finally had some sun but also to much seems to make me even more sore and tired!! I just thought I would share this as I feel like Its just one thing after an other as I lost my old job I have now been out of work for over a year other than the odd little work experience over the Xmas period, but in the last 6 months my health has gotten worse so I decided to change my benefits and to do this I needed to go to a medical which was not a nice experience the day I went was 1st thing that made me mad that it was not even a doctor looking at me! But anyway I received the results over the weekend and have been told I pretty much have nothing wrong with me! It’s a miracle that a nurse who has never met me had no medical history details could say my joint muscle and grip are perfect there for I should have no problems working and so on, there was a lot more in the letter than this but this was the main thing that just made angry others being she twisted everything i said etc! Now I have to go through the stress of taking this further as I am not happy with the decision they have made! All I really want is a job I know I would be able to do and also the hours but just at this moment where I live there is nothing so going on this benefit would be so much less stress and hopefully I would be able to try and get myself feeling better so I can look for more work.
Hi Sara can you appeal try and get a letter from your doctor to say how it affects your daily life. They might re assess you and overturn the decision. I have managed to keep my job I only work 3 days but have only just returned from having 4 months off I asked to change my days so I am in one day and out the other they have also offered me a different job for the same pay to ease the stress I really struggle to keep my job and honestly don’t know how much longer I can keep this up. I have to wear wrist splints I have a special chair for my back and a different keyboard and mouse to reduce the stress on my joints. I am allowed to get out of my chair and have breaks whenever I like but think they are only allowing me to do this because they have to and bc I have been working here for the last 11 years. I constantly eat painkillers just so that I can work. I am worried about giving up my job as I don’t think anyone else would employ me and I have always worked its the only way I know. Hope everything works out okay for you and remember fight them all the way this disease is horrible and people who don’t have it don’t understand how it affects every part of your daily life x
Hi Catherine, yeah I have some one who is helping me to take it further so I only need to sign a few forms and they will take over which is much better so I don’t need to worry as much but still stressful because I don’t know what is going to happen with my money etc which I need to help me get by! And I understand about your job situation as I went through pretty much the same but my work were not as helpful they just always moaned at me and just got on at me about everything no matter how many letters I got from doctors etc and also I worked in a pharmacy so they even knew about all my medication as I always got it there! I would say if you are able to work the hours etc you are doing then try to stick in at your job I know how hard it is when you are having bad days etc but I am not going to lie its harder when you are out of work to get back in, I am looking for work myself but there is hardly anything and its worse as I am looking for certain hours etc! But I try and keep positive and hope I will get myself and my life back together soon. X
Hi Sara I work for a pharmaceutical company dealing with pharmacies all day no wonder you couldn’t stick with you’d old Job i know how busy they get. It angers me how they can stop your money without taking into consideration how Psa affects people they just don’t have a clue. Hope you get your money sorted soon with the minimal amount if stress keep us posted on how you get on xx
One of the problems is that we are often judged by our looks. We don't look sick, so they think how could we possible be sick or be suffering pain.
I went through a similar situation many years ago, but have never forgotten how it affected me when I was not believed when I was telling the truth.
I learned from this and from then on and the next time I went I was much more prepared in my mind. I had prepared myself by writing myself a list of all the symptoms and problems I suffered. I thought about what I might be asked and how I would answer the questions better and in a way that would explain more about how my illness and how it affected my daily life. I had an example ready in my mind of a daily situation to quote if I needed to. Such as "my fingers are swollen in the mornings and I can't get the top off the milk or I have a problem chopping vegetables for the evening meal and I have to get help." I kept my answers short, concise and to the point. Another example was " I can only stand on my feet for 20 minutes then I have to sit down because my feet become too painful to stand on them." Be specific about time frames and explain what happens. The previous appoint, I had said " I can't walk for very long" and I feel this was ignored.
Second appointment I did allow myself to show my emotions rather than try and cover up and put on a brave face and I let the the tone of my voice indicate this. If you can mention the connection between this disease and depression if it applies to you, this may be a criteria they can not ignore.
Next appointment I did not wear make-up and I dressed clean and tidy but I wore every day clothes and did not dress up and I wore my very sensible flat shoes which look ugly with a skirt.
I was asked about my medications which I took with me and pulled them out of my hand bag which were in a clear plastic clip lock bag. I did this purposely so they could be clearly seen and have more impact. I put them on the desk and I explained I wanted to get the pharmaceutical names correct as many were generic brands and that can be confusing.
I did not like having to behave this way, but I wanted to make sure the did not make any false assumptions.
Oh my gosh! that makes me so angry when I hear that type of story and happens so often. general practitioners are just not familiar with the signs and symptoms of PsA. I also think they are so busy with their own lives, both professional and personal that they sometimea don’t atop to consider the ramifications of not taking the time to research something they don’t understand. and then there is that thing of not ‘looking’ sick. When I was waiting to see my rheumatologist for the first visit, one thing I did was keep a journal. I often didn’t even write down my symptoms but just used illustrations bc they were quicker to explain, and sure enough, when I went, my doctor listened to me show and explain my sketches. It was sort of like a teacher reading a children’s book, but he stayed interested and I felt I got my points across. My pictures were very simple, like a foot pressing down the gas pedal with an arrow that said, “OUCH!” or a stick figure throwing a ball for a dog with an arrow to the shoulder that said, “Can’t do this! Crackkkkk!” I also included dates of flares and other questions to ask, but he was most responsive to the pictures. I also took pictures of inflamed things like fingers or backs of knees or ankles and brought them along because as soon as I make an appointment symptoms seem to disappear!?! Until I walk OUT the dr’s door. It sounds like you had an uneducated nurse, unfortunately. Do you have to go to that clinic? Have you looked at Rheumatoid Warrior website? She has an amazing way of lifting you up and empowering you while educating you about all forms of arthritis. Her best message… Keep searching for the dr that will meet your needs and educate yourself. Most people who have PsA do not have RF positive blood. They are diagnosed by specialists… not a nurse who doesn’t have the knowledge to make decisions about your well-being.
Catherine, aw do you well yeah you will understand how mad the job is and the pharmacy I worked in was very busy so was on my feet all day everyday, and just before I left they dropped me down to 2 full days but personally full days are to much I feel I can manage like 4 or 5 days a week even but like maybe 4 hours a day and also only afternoon but they where unable to get me thoses hours so I had to just leave, yeah it makes me so mad aswell like many people say just because we look fine dose not mean we are and I find as iam only 22 people think I am putting it on and I do get a lot of the time aw your to young to be feeling like that and they just kinda laugh like am joking which I just try to ignor. X
Hi bella, yeah we are judge on how we look on the outside I get that a lot because I am young and I try to take care of myself I get all the time aw your young and fit, which to anyone on the outside yeah I do look young and fit but its not the case. I have had no problems with other appointments with docs etc just this one, but I know at the moment where I live they are trying to cut Down on certain benefits etc so they are just trying to fail as many people so they don’t get them as they want everyone back to work, but I have people helping me to fight it which have helped me in the past and won so fingers crossed, I am just mad because if I was feeling a little better I would just look for work but at this time i am struggling a lot my rheumatologist is very understanding and he’s said hisself I have got worse over the last few months and to take it easy, but sadly the nurse that done the medical I feel was not educated to understand this condition. Also she just had a list of q’s I had to answer so I felt I was rushed and not able to explain how I struggle day to day and in the letter I got saying why I failed she also twisted a lot of my words etc so I am very mad about at but I will get it sorted hopefully and am trying to not let it stress me out as it will just make me feel worse.