August 30, 2017 at 5:29 pm #136494
For the past few weeks to almost a month I have been getting really painful/hot joints in both my hands, wrists, elbows and feet and it’s leaving feeling knackered and I have only just started a new job. So I have spoken to my doctor and she’s finally found that the issue in my ribs is inflammation of the costochondral joint and I’ve had blood tests for possible rehumatoid athritis. How can I tell my friends and family, that I have got the conditon? My parents are already aware of how serious the problem is.
Its also come at bad time in my life my friend just been diagnosed with stage four cancer is undergoing radiotherapy and chemotherapy. However she has been told that is the chronic type and could potentially have years/decades
The same drug type that’s going to help my joint inflammation. I just want my body to stop feeling like it’s been in the oven all week. Also, I am in my final year of Open University and I really need the usage of my hands for typing and the final exams and I am also struggling to type this message. I’m also having to use siri and dictation, to save the pain on hands.
I have also recently had an extremely bad patch with my other friend Graham, who is aware of what’s going but hasn;t seen me in a while due to a major argument and I don’t want to tell him via text message or email. I would rather tell him face to face.August 31, 2017 at 7:26 am #136528
Hi yoyogirl 😊
Welcome to the forum.
I am sorry to hear of all your woes. I see that you are in your final year of Open University. I presume the course you are doing starts this September. Hopefully when your drug types and doseage are sorted out things will become a little easier. When my father had problems he was put on various drugs for a while and had big problems using his hands but when they had things settled down things were much better. One thing you may have done, but I suggest otherwise, is to contact the Open University and see what facillites are available, or suggested, for people with your issues. I suspect strongly that you may not be the first, and won’t be the last, with this problem. I do know that it is possible to get special keyboards and mice for people with hand problems. Have you tried a trackball instead of a mouse? With them the ball is on top and so you would be able to rest on it rather than having to move all round the table. It is also possible to get keyguards for standard keyboards so that your hands would be able to rest on the keyboard and press through the holes to select keys. Special software is also available that gives word prediction so when typeing a document you would not need to press all the letters so saving on keypresses. Ask your local health service (doctor) if there is an electronic assistive technology service as part of healthcare locally. I presume you are in the Uk so there may well be. If there is they may be able to advise on current technology which would help. If you find no-one seems to know I may be able to locate the local people if I know your rough location.
1 member liked this post:August 31, 2017 at 8:58 am #136593
I am sorry to hear of your illness. But it is wonderful you’re with the Open University. I definitely agree with SpinningJen: contacting the Open University and asking for assistance with your ill health will help. As already said: you’re not the first person with the condition and you will certainly not be the last. Good luck: I’m sure you’ll be successful, in spite of your illness.August 31, 2017 at 11:29 am #136605
The hand elbow problem is officially diagnosis and if they wish to go down that route it will be a long process to follow. But I am pursuing the issue as there’s no way I am going to head down the psychological route to the problem. Especially if I am showing redness and lack of grip/warm hands and overall lack of strength of the arms. I don’t mean the lack strength as what someone would get for not using it for a while or over usage. The only way i can desribe is as if it’s been burned and something sharp is in the bones.
If it’s hyper mobility joint issue then it’s a different situation altogether, but whatever is causing the problem is really painful and isn’t something short term. it’s gone beyond the acute (take pain killers it goes away) that last couple of days/weeks. I wish it was a short term problem or doesn’t impact on daily life.
In regards to speaking to the open university they have suggested I use Siri/dictation on my mac and they’ve allowed me to download the material as an audiobook, so instead of just writing notes from books I just have the material on my iphone. I have also spoken them about deadlines and final exam and they’ve made adjustments to my degree as needed and my profile has been updated with the information, but when it comes to the exam I will worry about that closer to January 2018.
Work have been really helpful and they have given me extra support and I have made my life easier by typing auto-generated information that I can I just copy and paste and they’ve also said I can use the dictation software. I also have access to work advisor coming in next week for further help.
I have bought myself a special mouse mat for people with chronic pain (extra gel padding) that I am going to use at home and special mouse as well. If I can’t manage the track pad. As for speed at work, they are not too worried about speed or typo errors as these can be easily corrected. I also have learned new short cuts for things on the computer and usage of Siri has made my life easier.
1 member liked this post:September 4, 2017 at 7:40 am #136802
Thank you for the update. I am glad you are getting things sorted and people are being helpful. Careful planning alpng with the help you are getting will make the day!
Good luck with the course and exams xSeptember 4, 2017 at 7:31 pm #136916
I have recently had my access to work assessment at my workplace and things are looking really positive. Work has agreed to change my seat, I now have my managers chair as all the rest in the office are pretty knackered from over usage. People in my office slouch around like they are in Bahama’s all day. So the backs are constantly busted causing facilities to make frequent visits., they have given me extra support for hands and that’s helped tremendously. I am also getting assistance with organisation and managing my work better so I’m not stressed. They’ve given me my own desk with my adaptions so I don’t have to sit next to miss loud nails and they are thinking of getting me some dictation dragon software for my computer. I have also made a few purchases myself, for example, I use a specific pen to write with as the bog standard biros they have at the office, are really difficult with Dyspraxia and the pain condition combined. I will be speaking with my doctor on Wednesday to discuss the inflammation of both my hands and my sternum inflammation and I’m asking about stronger pain killers something that is longer acting as standard otc doesn’t work for me and just leaves me feeling more in agony.September 5, 2017 at 7:50 am #136955
It sounds like your workplace has things in hand. I know of Dragon Dictate as I used to know someone who used it. It does more than dictation as it can be used to control the computer as well so apart from pressing the button to turn on, you should be able to do everything else without touching it. I remember going to occupational health for a minor issue one time when I was at work. The doctor there used it to type my report letter during the appointment. He did not need to use it as he was fully able, but found (and showed) that it was quicker for input than using a keyboard. It’s just the initial training of it that is a bit tedious.September 7, 2017 at 1:16 pm #137138
Yesterday yesterday I was supposed to go my medical appointment with the doctor but receptionist who “booked” the appointment didn’t confirm it and I went there yesterday and there was no appointment, increasing extra frustration and anxiety. So i booked a new appointment for today and hopefully he/she will give me some definitive answers to my current situation and I’ve just purchased a new headset for my laptop at home so I can dictate all of my messages rather then type and complete assignment, notes at ease rather than taking forever and increasing my joint/bone pain and frustration plus anxiety/stress levels.
I hope I have also spoken to my friends mum I let her know that I am unable to cope with Becky’s cancer situation as it’s creating my frustration, stress, anxiety and that’s making me unwell as well. My mental health hasn’t been too good over the past six years and I don’t want it to relapse further into depression and then mess up my job or my place with the Open University. That would completely wreck my mental health. I’ve got enough on my plate to deal with as it is.
I do feel as if I’m being selfish but I’ve got to protect myself as i can’t handle negative positive situations intermittently it really me up. Long story short is that two years ago, I had a job in acall centre which was great but really stressful, they were messing me around and it turned out to be temporary contract and there was no chance of it going permanent. It was late February and my mental health got really bad stress, my dog was ill and I was struggling with assignments and on last week I had a psychotic breakdown due to constantly switching between things are going to be positive vs, I am going to lose my job and my dog being ill. I was also working late hours, wasn’t sleeping and my friend Graham were at lock heads every week and i didn’t have much social contact or any form of enjoyment apart from the telly for company. At the same time, I was having physical issues with my health and my mental health wasn’t good either. So the combination of not sleeping/eating, stress/anxiety response and the current situation became too overwhelming for me. I hallunicated, was completely paranoid, believed that weird stuff was happening i was being chased etc and heard voices that weren’t there like I was in a movie/breaking bad. It all happened at home and within the hospital and lasted 24 hours. I was close to being sectioned.
So I am trying to protect myself without being too selfish in these situations, I am just managing the job.September 7, 2017 at 1:32 pm #137140
‘She’s also calling me frequently about what’s going wrong the story keeps changing, i know she has stage four cancer but little things are not adding up and I’m unclear of what’s going to happen to her as one minute she was saying she wants the 999 ambulance to drive her straight to hospice to pass away and then the next minute and next minute she’s years and her text messages can be quiet and ambiguous but because I take things literally it causes me too much stress worry really sets off so I feel constantly in fight and flight mode flight mode on top of anything else and it’s also increasing the pain, inflammation and fatigue in my joints/bones. I’ve had to take increasing amounts of codeine to get through the day and I constantly mentally and emotionally and physically knackered and because its all getting too much for me im frequently getting upset and frustrated with it all.
I want it to be in black-and-white so I can understand it better I want to know what’s really happening and not have forever changing stories as it’s really pissing me off. Excuse my foul language.September 7, 2017 at 4:48 pm #137153
That is very tough, yoyogirl. I don’t have any words of wisdom but I can appreciate things are extremely rough for you. I tend to break things down and deal with one situation at a time. Like your dog and then dealing with your job: that kind of solution. By the way, I do hope your dog is better now. I’d certainly deal with one problem at a time. But I know that is little comfort. I don’t really know what else to advise, but good luck with the Open University.September 7, 2017 at 5:09 pm #137159
Unforunately that situation all happened in one week in Feb/march last year.
my dog is now well it only lasted a few days and it turns out he scavenged something outside that caused pancreatitis.
as for situation at the moment it’s all happening in different directions and getting too much for me. The only real “rest” I feel is the feeling between 11pm and 9am every night when I sleep lol.
Thats the only time I don’t give a monkeys about anything and thankfully not care. I feel glad 😁 when I days off from everyone and everyone and I deliberately make use of my empty calendar days as my phone is switched off. I don’t bother with phone calls unless urgent and all social engagements activities/enjoyment are cancelled and never get bothered with.
i live life like a robot, job gets done, ou gets done and watch telly go on YouTube/sleep. There’s no enjoyment in it. What’s that lol???? & i simply do not want to docs myself to go out and do activities on my days off. No No No!!!!September 8, 2017 at 7:22 am #137177
I find when a crash comes is to take things slowly and steadily rebuild bit by bit. Many years ago I had a mindset at one poin,t when things were really bad, which I called robotic mode. Not really like yours, but treating things in a purely logical manner without emotion (cf Spock in Star Trek). It helped me cope with a near breakdown as I could determine, and split things into, what was real and what I may have been imagining. Not really a thing to do for any length of time but it did help me out of a rut.
I am similar with phone calls all the time. My mobile is seldom on and I don’t often use the house phone.September 13, 2017 at 1:32 pm #137564
I can be very anti-social, but I’ve always been that way. I do know where you’re coming from: I get up, work, clean my flat, go on YouTube, cook dinner, have a friend visit in the evening, watch a music DVD, then go to bed. It never ends. There is definitely room for change. To deal with this, I go traveling. I don’t know if you’ve got the funds, but have you considered doing this? Going with friends could be an option. Anything to add excitement and happiness in your life would be worth it. I mean, I went to Ireland this year to attend a wedding. I went to Sweden a few years ago to celebrate my grandmother’s 90th birthday. I have also been to Spain, Greece and Lanzarote. Again, I don’t know your finances, but even a short trip would help. That’s my penny’s worth.