Phew. I should really be counting my blessings right now that I’m not in hospital. I was in a pretty bad shape last week and being that close to injecting wasn’t the best feeling in the world. I’m still recovering from terrible AI hangover…
On last week’s Tuesday I traveled to Tampere to participate in “Harvinaista Työniloa” – Rare Enjoyment of Work – occupational health seminar. “Harvinaista Työniloa” was a local project in the Tampere / Pirkanmaa area meant to offer support and ways for people with a chronic, rare disease to cope at work better. It consisted of meetings with a occupational health coach and regular group support meetings. Every participant got an individual assessment and rehabilitation plan focusing on their personal strengths and resources. The plan’s actualization was also followed during the program.
I was asked to participate in the seminar by an employee from The Finnish Association of People with Physical Disabilities. Last November I attended their peer supporter course in Lahti where I got my certification for organizing peer support for my patient organization, the APECED Addison. She remembered that I’d been previously working as a doctor in occupational health care and asked if I’d like to attend and perhaps give comments at the seminar. I was really delighted as I’d met the project’s coordinator Susanna Koski last year at another rare disease seminar and we had a long, good chat about the program and her work.
Actually, at the seminar I was then asked if I’d like to give a short speech there about my own story and how I’ve been coping with my diseases and demanding work of a physician. It was a great compliment and of course I accepted. If you are new to the blog, my story of how I got diagnosed with adrenal insufficiency and what happened afterwards was first published at The Adrenal Diaries blog – A Doctor Diagnosed With Adrenal Insufficiency.
The seminar was held at Tampere-talo (Tampere Hall) at the heart of the city:
We had participants from the program telling their story about how they have been coping with their work while being chronically ill. We also had expert lectures and a panel discussion with doctors, occupational health care workers and the patients as well patient organisation employee talking about options how to improve the ability of patients to continue to work and how to support them and their work community better. A big topic was also how to increase communication between health care professionals in the hospital, primary health care and occupational health care about the patient’s needs. People seemed have benefited from the program – the final results are still pending – and I truly hope it gets funding to continue and hopefully the good practices can be also be applied elsewhere in the future.
The only negative part of the day was the probable issue with bad indoor air. I’ve been exposed to mold toxins in my previous workplace and react pretty badly with my asthma whenever I get re-exposure. My friend’s boyfriend told me later that Tampere-talo is going into big refurbishment this year. Hopefully they’ll get rid of the problem… Less than an hour into the seminar I was losing my voice and having trouble to breathe and had to use first my short-acting asthma inhaler and then also my long-acting inhaler. I developed a headache and started to feel feverish with shivers and troubles with concentration. It would have been more endurable if there would’ve been more breaks so I could’ve gone outside to get some fresh air but the timetable was very tight the entire day. I’m thankful that I didn’t completely lose my voice and I was able to croak through my speech in the afternoon. I also had to take more hydrocortisone as I started to feel weak and dizzy and my pulse was all over the place from the inhalers. It didn’t help that I of course had a slight stage fever because of my upcoming speech.
Overall I really enjoyed the day, especially the lecture of docent Marja-Liisa Manka from Tampere University about positive psychology, work engagement and enjoyment of work. She’s a Finnish pioneer on the subject and has written several books about positive psychology, stress and work. She also has her own coaching business, Docendum. I was so honored that she came to talk to me after the seminar and thanked me for my speech and congratulated me for my efforts and positive attitude! 🙂 ❤
After the seminar I had to updose with more hydro just to stay upright – I was dizzy, nauseous and shaking and my every joint and muscle ached. I pondered if I should inject when I started to have this really out-of-this-world sensation and again my vision was blurring / narrowing as I stood up. I really hated the idea so I dissolved 20 mg more HC under my tongue and kept my fingers crossed that it would help. Luckily I didn’t have to stand or walk very far as my friend Anu came with her boyfriend to pick me up from outside Tampere Hall. We went to a small, local Chinese restaurant with her. The extra hydro tablets slowly begun to work and at the restaurant I started to feel I wasn’t in immediate danger of passing out in my chair.
The food and good company then picked up my mood and blood sugar. I had one of my life’s best beef with cashew nuts, and their Kääg chicken was also simply mouthwatering. If you happen to visit Tampere, check out the Shanghai restaurant – the food’s delicious with great value prices :).
After the meal, Anu had another treat for me planned – an ice hockey match ❤ ! It was my first Finnish Hockey League game where Tampere’s own Tappara played against Lukko from Rauma. My friend Anu is a big Tappara fan – I’m grateful she suggested we go to the match as I really enjoyed it! Luckily I started to feel better just before the match and was able to follow the game. Of course due to our enthusiastic cheers the home team won 4 – 2 :).
After the match I seemed to have exhausted my good luck charm abilities as we had a run-in with a local bus. A foreign driver drove straight at our side as Anu’s father was giving us a ride home, scratching his van badly. The bus driver then got out and started to yell and accuse us of the accident. We had to wait for the police for over an hour to sort the mess out. I was fortunate enough to be told to wait in the van as the weather was chilly. I had already enough hydro so I didn’t need to updose any more. In the end it was actually quite amusing to watch the bus driver make a complete ass of himself in front of the police as we only had about couple of hundred witnesses leaving the match that could vouch that he crashed us. At 11 PM we were finally at home and I immediately crashed in to get some much needed sleep :).
The end of last week was then a disaster and I spent almost all of the time in the bed or sofa recovering. I haven’t been able to lower my hydrocortisone dose and my asthma is still acting up so the day before yesterday I had to switch from HC to prednisolone in order to try to control my asthma. I’ve been forced to take extra inhalations every day as well as mucolytes and decongestants and I still get shortness of breath if I walk uphill and at times even just sitting still / lying in bed. I’m now taking prednisolone 7.5 mg + 5 mg + 2.5 mg what is an equivalent of 60 mg’s worth of HC. According to my previous endos, I should be unable to sleep and ballooning up like an elephant. Instead, I’m almost losing weight even though I’ve been eating like a horse due to blood sugar crashes and am feeling weak, dizzy and tired so I sleep all the time. Figure that.
To end with a positive note, Franz is growing up to be an absolute charmer! ❤ ❤ He sleeps well every night, gets on well with children, other dogs and animals including cats and tortoises, as well as our hamster Tara 🙂 . We’ve been to puppy training school and later in spring I’m thinking about enrolling him into competitive obedience training classes!
Learn more about obedience training and competitions from The (British) Kennel Club: New To Obedience?
Wishing you all a wonderful and healthy rest of the week,
❤ ❤ ❤