I’m feeling very nervous about being at work this morning. Last Friday my boss of 10 years left and I now have a new boss. I don’t do change very easily, maybe because of my mental illness. I am so full of anxiety this morning I could throw up.
I have met my new boss as we have had a handover period, he seems very nice but I know things are going to be very different. Getting to know a new personality and having to work closely together, learning new tasks and different processes etc.
I know I can do the job so I have no idea why I feel so bad. You know when you are so comfortable in your job it’s like a pair of comfy slippers; you know how to do things without even having to really think about it. Don’t get me wrong I’m up for the challenge I am just feeling very very nervous!
Just writing this down is quite cathartic, it’s making me think about how I am feeling and is making me take a step back from my anxiety and do some breathing exercises so it was worth writing this. I have helped myself!
The boss is due in shortly, so let’s just see how we go, I am sure that we can make it work, I’m telling myself that change can sometimes be good!
Last week my doctor changed me over from daily Azathioprine to weekly Methotrexate. I couldn’t stand the side effects any longer and it wasn’t really doing much to help my eyes.
I am on week 2 of the Methotrexate, I spend 3 days crook as a dog (the day I take it and 2 days after), horrible but I guess it’s better than the 7 days I felt ill on the Aza. It’s unfortunate I take it on Fridays because I spend all weekend feeling awful then I’m back to normal again for work on Monday …. Hmmmm that was a bit of bad planning!
I’m starting to wonder if my eyes will ever improve, it always seems to be one step forward and then two back. It will be 2 years in November that I have been battling the scleritis, can’t believe how quickly time flies. But it’s not good when you think about it, nearly 2 years and they are no closer to finding out the root cause and really my eyes haven’t improved that much either. I have days where they are so painful I can hardly stand it.
My doctor always calls me a medical mystery and his VIP patient as I’m there every fortnight for my treatment. I guess when you have something relatively rare happening in your body that they can’t solve you do become a bit of a medical mystery. I have seen a rheumatologist, and probably about 6 different eye specialists and I’m still suffering with vision loss and chronic daily pain. The next step is the immunologist; my eye doctor has written a referral so I will see what they have to say when I get my appointment through.
I guess I just need to keep going, keep my mental health well and hope that one day I get some definite answers and a solution to the problem. I think the key for me is staying well mentally, if i’m good in that department I can cope fairly well with the pain and the daily struggle to see. I’m really working hard not to fall down that slippery slope to depression, so far so good!
I went to Kmart at the weekend and got some packs of 8 gel pens, then came home and packed them up with a colouring book. I have 9 sets to give away as gifts to mental health patients in my community.
I hope that whoever gets them enjoys the experience of colouring as much as I do and that it helps with their wellbeing.
It makes me feel so warm and fuzzy inside to be able to give these gifts and if colouring makes a difference to any of the recipients lives it will have been worth it.
I need more new colouring books to replace the ones I am giving away lol!
Since I started colouring my tastes have changed as I got a little better at it and saw what an amazing assortment of books are out there by some very talented artists. As a result I have probably 6-8 books or more that I know I will never open or that just has one page coloured.
The 6 above are my current favourites, a couple are still on their way and I cant wait for them to get to me. Anyway what should I do with the books im not going to use?
I have had an awesome idea (in my head its awesome anyway lol). My idea stems from the fact that colouring has really helped my mental health, colouring makes me happy and thinking about colouring and buying new supplies excites me. Anyway you get the point, colouring is amazing for mental health. So lets get back to the point in hand, my cunning plan ……
Next time I see my psychologist in a couple of weeks i will take my surplus books so that she can ask her other patients if they would like to try colouring. They can have a browse and take a book home to keep. These people may never have given colouring a thought and they should totally give it a go as it does help with wellbeing. I dont see a negative in this plan, but I will certainly check if its ok with her, I won’t just dump a bag of books on her desk! Also if nobody wants them I will take them back, she won’t be left with a stack of books.
I might also buy half a dozen packs of cheapo gel pens so that the people who want to give it a go will have a starter set to get them going.
What do you guys think? Win or Fail?
Am feeling a bit low right now, my eyes are in a shocking state and I cant see any end to it. I still have practically no vision in the left eye, its just a white fog and the right eye is red and sore. The combination of two severe eye diseases (keratoconus and scleritis) is taking its toll on them.
I had an orbital CT scan last Friday and I am seeing the eye doctor tomorrow hopefully to get some help. I am really struggling at work, reading paperwork and the computer screen is a real challenge at the moment. Luckily I have the BEST boss, he is very in tune with my illness and helps me as much as he can.
Although it is a struggle to see I am finding my colouring really helpful. My lovely partner got me a set of magnifying goggles with a light on and they have made so much difference. Its so difficult to colour when you only have partial vision in one eye but I am still enjoying it and it takes my mind off of things. This is my latest piece from Alices Adventures in Wonderland. I think if I didnt have my colouring I would go nuts right now, it is very therapeutic. I also rely heavily on reading to keep my mental health stable. I read on my tablet where I can make the text gigantic so that I can see it. I am having to use a magnifying glass to see the screen on my phone and tablet at the moment so the eye situation is not good.
Hopefully will get some positive news tomorrow. Sorry for any typos, im not seeing so well so its difficult!
This is how I try to live my life.
I have been in a lot of pain this week and it’s making me feel cranky. I’m over it and want it to go away.
Bipolar bear is definately trying to knock my door down, can’t let him do that so I am turning to my weapon of choice books! Reading is so hard with chronic eye pain but seriously it’s the only way I can get through my days. I lose myself in a good book and the world feels right again. Some how when I am transported in to a fictional characters life the pain and depression seems to fade away a little. I get a feeling of serenity.
I’m doing OK on my goodreads chalenge for 2015 I’m at # 76 of 100.
I found this quote and really liked it, I have no idea who drew it but it’s beautifully done.
I am now 11 months in to my journey with scleritis. I never in my wildest dreams thought for one second my eyes would still be flaring. I thought a few weeks on the meds and it would all be over.
Approximately 347 days later I still have severe eye pain, redness, photophobia and swelling around the eye, I always look like I have been punched in the face. I don’t want to look people in the eye when I am talking to them in case they think I have been bashed up. Some days are worse than others but it’s a constant no relief kind of pain of varying degrees. The pain of scleritis is intense and relentless and unfortunately chronic headaches come with the eye pain.
I have been admitted to hospital, been on steroids and chemotherapy drugs, had many eye injections and had loads of tests and they are no closer to finding a cause or a resolution. The next step up from the immunosuppressant chemo meds are biologics. Biological products often represent the cutting-edge of biomedical research and, may offer the most effective means to treat a variety of medical illnesses and conditions that presently have no other treatments available.
I am HLA-B27 positive which is a genetic thing that makes me predisposed to getting autoimmune diseases like scleritis. There may not be an underlying cause but my GP feels that there will be something there because whatever we throw at it doesn’t fix it. It also brings in to doubt my fibromyalia diagnosis ….. are these symptoms part of an underlying disease and not fibromyalgia at all? I think it probably is and they just haven’t figured it out yet. Wish they would hurry up and find something I am so over the pain every day, not to mention that my eyes look a mess.
Unfortunately I also have corneal neovascularization in the left eye, which means I have blood vessels growing into the cornea. The cornea is meant to be clear so the blood vessels are causing hazy vision almost like a cataract. This means that I have to wear my scleral lens in the right sore eye to be able to see (keratoconus has made my vision extremely bad 20/450). Not ideal to wear a lens in a sore eye but I have no choice I can’t afford to take 347 days off of work!
Fortunately throughout this journey my mental health has stayed pretty stable, could be a whole lot worse!
All I can do at the moment is continue with the painkillers (endone – oxycodone) and try and get through each day one at a time. I have a feeling that this journey is going to go on for a while yet.
This week is mental health awareness week. Lets show some support for those who suffer with mental illness, an invisible illness.
Our family had some terribly sad news today; a family member has committed suicide. Can suicidal behaviour run in families? I ask because this person lost a parent to suicide some 25 years ago and has now gone down the same path. My condolences and thoughts go out to the family, I really feel for them. As a person with mental health issues this is often something I think about, in both good and bad ways.
When I am feeling good and on top of the world I know I will never do anything like that to hurt my family so badly, but in the bleak times suicide is often at the fore front of my thoughts. I have in fact had a couple of brushes with suicide myself in the past but over time as I have become stable and improved I can see how selfish an act suicide is. Suicide is very final, there’s no second chance or backing out once it’s done. It’s not courageous to kill yourself; anyone could do it if they wanted to. What is courageous is staying alive and working through those battles that go on in your head and staying alive for your family.
I have made a commitment to never ever put my family through the horrific pain and loss that they are feeling today. No matter how bad I am feeling, (thankfully that doesn’t happen often nowadays) but even if I am feeling terrible and suicidal I am going to go to my family and say I need help and keep me safe.
Please read this and make the comitmitment to never put your families through this. If you are feeling suicidal speak to someone and get help. You can also call lifeline on 13 11 14. Keep yourselves safe and let’s all be here for many years to come and grow old with our loved ones.
RIP SL, it was a pleasure knowing you, my thoughts are with your family at this sad time.