This may seem like an odd post, but I may have given the wrong impression and made recovery from TTP seem easy. It isn't, and you have to fight.
10 years ago when I was first diagnosed with TTP I was wracked with anxiety, about it happening again. I believe this fear is exaggerated by the steroids. I don't want to underplay this for others that are recently diagnosed and treated, or those that struggle. It is debilitating.
Over time though I have found ways to deal with it. Counselling was one of my first points of call. As I gradually came off the steroids I was advised that I should be trying new things, or retrying things again. Like driving. I've written a post about that already. I have to thank the Haematologists and a Beacon Centre Counsellor for all the help they gave me.
The second step, for me, was rebuilding my strength. I achieved this by exercise, mostly just walking. Mindfulness walks! I now average 10,000 steps a day, and I like a walking challenge.
Thirdly, diet. After being told I had Steroid Induced Diabetes I try to be as sugar free as much as possible. That doesn't mean I refuse a piece of birthday cake, but I stay away from snacking, from desserts, and from processed foods. I may be boring but it works for me and I no longer need medication for Diabetes. I'm told to carrying on doing what I'm doing.
Years before my diagnosis, I had some contact with the Alzheimers Society through a parent. I learnt back then that Brain Training is a real thing, and I do play games on my tablet. Some people frown on that, but I believe it really helps with memory. I do still have to keep a calendar and makes notes 😉.
In 2013, I was told by a nurse that I should find a new life. I have always fought against that. I realise now that my life is changed, but not replaced. I wanted my old life back, I now accept some things are still challenging, but I also want the fight acknowledged for us all. And I think I have found a happy medium.
People will often say how well someone looks, and that's encouraging. I think they may not realise the effort that has gone in to it. Many people, of course, have their own battles. It's all relative. I spoke to a friend recently who has had two heart attacks in quick succession, and he told me he was well again because he fought hard. He spent time on an exercise bike, and now golfing and walking. It really does help.
So anyone reading this blog, please understand that, to me, determination is an important part of recovery. We are all different, of course. It might not be immediate, it might be painstakingly, worryingly, slow. But you have to fight your own demons. Try to do something each day even in a small way, then build up. When I first came home from hospital, walking up and down outside my home was exhausting. Now I walk miles.
For some , the Adamts 13 levels remain low. Mine rise high and fall low quickly. We are all different.
Today was Tai Chi class and I love it. It is grounding, relaxing, fun. After the class I walked to the beach, the tide was out and the sun and the
sky reflected on the sea and the wet sand.
No rough waves today, all was calm. Everything looks better when the sun shines.
Keep moving! ❤️
❤️
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