Welcome to the forum, thumbs up to your title post… On the journey and that is exactly what it is. I’m sure you will receive others posts and hope they ,as well as mine may offer some help, it is written from personal experience, so please feel free to ask away! Reading your post your dates span over quite a few years, and like you can relate to that moment when you finally have some answers and a confirmed diagnosis, this must have been a drain on you? This took me a while to come to terms with and tbh a good 18months and really only after completing the First Steps Programme (you can find info on the website if you haven’t seen this) and some really good support on this forum. I think the not knowing is worse, being left to wonder it could be this, that and the other and also difficult when you have experienced the input from different care professionals as you did with different opinions.
What I do take from your post is the positivity in your approach and what you are doing and good on your with 10km a day! I truly believe that exercise and a glass half full approach and maintaining that level of ‘doing’ is key. It doesn’t matter to me if the ‘doing ‘is reading a chapter in a book, going for a walk or managing to catch up with a friend for coffee, it is still doing. I too can relate to don’t feel like the ‘old me’ but again it is a journey, I wasn’t the same person I was in my 50’s or 40’s as I was in my 30’s. So ,I have this condition, I’m still me, just another different version on the same journey like you and many others. I recall a friend asking me what was on my bucket list when I shared my diagnosis, I laughed and said nothing in particular, if I want it and within means I have it, if I want to go somewhere, I go, if I want to do something I have always done it. My perspective on that hasn’t changed. I have no burning desires to go out a run a marathon, climb a mountain or a skydive! I read a lot when I had my diagnosis, about starting medication, how it works, how it absorbed into the body, reviewing my diet, though I have a relatively healthy diet. I have regular support and input from OT and neuro physio, I exercise every day more than once, walk every day though some days not too far whether rain or shine. I have found some wonderful support on the forum, there was a YOPD group on here but haven’t zoom for a while with everyone having their own commitments. I found a local support group and joined there, took my mum for moral support to the first meeting, they thought I was very considerate in going with her and quite funny when I told them it’s was the other way around!
Like you fatigue is a BIG issue, very frustrating coming up to mid-day and like you have felt the impact on my career. I reduced to four days but even this is proving difficult, I have workplace adjustments though this was put into place before my diagnosis following surgery, voice activated software helped and even funny at times with training the words! I too am considering flexible retirement/retirement options and would recommend you look at all options before deciding. I have no worries about retiring, though as you mentioned not being the person you were I too felt like this, but at the end of the day, or rather after over 18months struggling and managing with symptoms and stress this is causing it just isn’t worth it, health has to come first. Do you have contact for your local hospital occupational therapy? At my local hospital I found a wonderful team and had sessions over about eight weeks, pain management, fatigue and coping strategies and still to this day incorporate this into each day. I get up each day and take it as it comes, I don’t overload myself with more than one goal in a morning, I plan nothing after 1400 and get a second wind around 1630 and then go for a walk. I’ve been on Sinermet just over two years now, and currently reading/researching tips on sleep,B12 links and menopause. And I didn’t know tonic water was good for cramps, though did know chocolate raisins help with constipation!
Hope this helps, stay positive and good look with the daily 10km! Keep