These are mantras we say to ourselves either in silence or out loud. I don't know about you, but for me discovering I had something that couldn't be cured but could be contained was a shock and relief. That the experts didn't know what it was or why one contracted it was unsettling. The instant relief from symptoms was bliss so much so that I went back to my normal life.
You all know by now where that led. Big mistake. So, after the third flare, I reevaluated my life and activities. By now I was on 10 different drugs for one thing or another. These were the hurdles I mentioned earlier. Bursitis, Steroid induced Myopathy, Neuropathy and a weakened heart valve. This on top of GCA and PMR with all their wonderful symptom so wonder we become somewhat self centred and slightly obsessed with our condition.
Three years into this journey I am hopefully on the way out. Follow the yellow brick road. It's the return path that now concerns me as the physical damage these drugs have induced needs to be addressed. I'm still on 7 medications, stopped 3. Prednisolone is down to 3.5mg daily and I'm feeling stronger if drastically reduced from my level of 3 years ago. It has to be said that I shied away from any real exertion during this period and maybe I am to blame in part for my parlous condition. The fear of the pain recurring from overdoing it was the main factor. That being said I have to regain muscle and fitness in order to begin anew. Don't know how long it will take or how much can be regained or even if I should at present. How do we ever know when it is right to start pushing again. Can we ever know if the condition has finally gone away? One has to hope and make a start.
What brought this on??? Well, I decided that I was not in a condition or age to install my machines and have a new workshop. The man that came to see the machines for sale was an ex paratrooper and extreme marathon runner in his early 50's. He's contracted MS. What a role model for anyone suffering. Struggling but undaunted. His mantra, we like the hills, is what keeps him pushing despite the obstacles. I too share this. Some people only like going down, but some of us enjoy the effort of going up. I came to Durham for the farm and the hills. They were my joy in training for my tours. The journey is harder but the rewards of the vista and the journey down are the whole essence of the effort.
So keep pushing and rest assured, the top is in sight and the return trip is worth the effort.
Written by
cycli
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Good to hear from you, Cycli. Starting my third year since dx. Down (tentatively) to 2.5 mg of Pred. Energy levels definitely not yet back to pre-dx levels and it's hard to know which aches and pain are due to the reduction in Pred or the passing years!
Best of luck on your way back up the hill... I'll be tackling gentle slopes (electrically assisted 😏 🚲)
Presumably electric bike. Can't see me doing that. It will be strategic use of correct gearing or nothing for me. Hard miles and effort but not for a while yet. Up the hill from the farm and down. Repeats as I get stronger.
It's hard for some to understand. In a way it's like this disease/condition. Unless you experience it first hand it isn't possible to understand. The difference being I would wish people to appreciate hills but not PMR or GCA. I can't run now. The muscles won't fire properly and I don't trust my legs or their ability to respond in time to my mental requests.
When something bothers me I try to think it through and then write about it. I never know whether this will be a shared experience. I tend to write monologues which may well be self explanatory and therefore not encourage discussion. Be that as it may I DO always want feedback and critique, After all it may be tosh and someone needs to tell me. I'll never take offense. Happy struggling everyone.😀👍
keep on keeping on…… I’ve been on a similar mission , and am now on 2.5. After a wobbly reduction im now levelling out. I go to the gym, and can now manage Pilates. I am definitely recovering some muscle strength, but like you try8ng not to bring on the muscle pain.
There are two types of muscle pain. With PMR blocking the oxygen the pain is contracting muscle which cannot be worked by forcing it to extend and contract through exercise. The good pain is freely acting muscle which allows extension and contraction naturally through exercise. This occurs when free of the condition. Admittedly low threshold exercise can be done with PMR but not sufficiently robust to rebuild muscle. New muscle can only occur by breaking down current muscle. Prednisolone has two nasty side effects. The first is breaking down muscle and the second is not allowing muscle to take up a percentage of the protein you consume. A double whammy. The lower the dose the less effect. Unfortunately we don't know what that dose is and it will differ for each individual.
Great that you are down to 3.5. You used the word 'pushing' three times in your piece... How about this interpretation of the three gunas - 'rajas' - action and energy, but in excess can become overexertion and mindless activity; 'tamas' - rest and reflection, but in excess can become sloth; 'sattva' - the lovely bit in the middle of harmony, balance, enjoyment and awareness.
pertinent Viveka. Probably explains why no Indians in the pro peloton. Going uphill you need to push but using the correct gears it is relatively easy. I was using pushing mentally mostly rather than physically. Keep pushing meaning hopeful and forward looking, however when trying to build muscle pushing becomes physical. You have to exert yourself to make the heart pump and break down muscle fibre in order that new fibre grows. That's the issue with our condition, not overdoing it and flaring.
I should have said thank you for the constructive comments Viveka. Always appreciated. On balance, you might like to read a book by M. Mitchell Waldrop....... Complexity. The emerging science between order and chaos. Essentially saying that complexity is the knife edge where things happen . It's the exciting place where one balances and develop between stasis/order/control and chaos, where nothing is predictable and everything is uncertain, challenging and forward looking. With cycling one experiences every one of your three gunas. Only in competitive racing does one sometimes get into a state of excess but that is still controlled as it's within time and distance limits and comes back to normality once the race is over. One can relax riding within ones capacity through beautiful scenery on a sunny day or improve strength going uphill and be overjoyed coming down the other side. 100 miles or more a day is as nothing when fully fit and nothing quite touches all the bases like cycling.
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~What immunity have we with a reduced steroid intake for our PMR? ~
Am I just being a wuss?
Another urinary infection
Prednisolone not just for PMR?
