Someone To Hold Your Hand

I think it’s fair to say that a lot of things you read online are either inaccurate or irrelevant. When I was diagnosed with TTP in 2013 I was advised not to randomly search for information.

Much of the information can be out of date. Much of it is from a professional point of view and includes phrases about mortality rates and shortened life spans. Well patients don’t need that when they are under the effects of high dose steroids and suffering from PTDS. We need positive stories, and I hope mine is just that.

That first treatment period, following diagnosis is so scary. You need someone to hold your hand and tell you how well you’re doing.

Of course, it’s hard for your family and friends too. My husband says that being called into a side room and told the worst things was traumatic too. And these things are not easy for others to just put aside.

So remember to look forward as well as up. The TTP Network is the only place I have found other people diagnosed with TTP and have been able to read their stories. And we are all survivors. There are some positives. Don’t get bogged down. Find solutions, find ways to do things. There are worse things in this world.

Since my diagnosis I have travelled abroad, I’ve finished a virtual walking challenge from Lands End to John O’Groats, I’ve worked, and now I’m eagerly awaiting my State Pension on my next birthday.

TTP Treatments

Comments

10th Dec 2024, Trees

There's something about trees that is ultra calming. Just looking them, but walking through them is just amazing. They are timeless. When family come to stay we always walk in the woods. It's something everyone should do, I recommend it for exercise and wellbeing. At this time of year, many people are thinking about trees. Our Christmas Tree has been decorated since 2nd Dec, and it certainly helps brighten our home during this darkest month when the daylight is at its shortage. Our tree is artificial, we've had it for years. It's carefully packed away each January and reassembled at the beginning of December. It's decorated with ornaments collected over the years, gifts from friends and family, near and afar, and souvenirs from our holidays We love our tree 😊. Trees come in all sizes 😊 Another favourite tree in our garden is our Acer. It's beautiful all through the year, especially autumn, ...

31st October 2024, I'm A Halloween Grinch 🎃

I don't like Halloween. It's origins or the 21st Century version. Right from it's beginnings it has been about death and spirits of the dead. I always say I'm not superstitious, but somethings shouldn't be messed with. Halloween, or All Hallows Eve, has been turned from a Celtic tradition to ward off evil and spirits, to a commercial nightmare. I know that many will say that nowadays it's just a bit of fun, but like my fear of spiders, its maybe instinct. Maybe its the near death experiences that TTP survivors have, a little too close to home. Winter in this part of the world brings darkness and cold, something that the Celtic people took seriously. If any misfortune befell them in the winter, they likely didn't survive. For a while the Christian form of All Hallows Eve became a time when the poorest folk would beg at more wealthy folk’s doors for food, in return for offering prayers. Now children are encouraged to trick ...

21st October 2024, Newcastle, Gateshead, Angel of the North

This weekend away was not my choice but my husband's. To be fair I've had my weekends away and it was his turn. Of course, it involved football. BHA v Newcastle. It's on his list of dreams. What would my grandfather, a supporter, think of us flying to Newcastle to watch a match? We flew with Easyjet, cabin bags under our seats, and limited amount of cloths. I've never travelled for a weekend before knowing that I would need to wash undies. My meds (not TTP related) took up more space than my toiletries! We arrived exhausted, but driving would have been so much worse. We ignored our own travel tip and landed after sunset. It's disorienting to land in the dark when you have no idea where you are. Flight delayed at both ends, we took the Metro from the airport to the city centre, it was delayed en route, and then we left the station by the wrong exit. It resulted in us walking more t...

Porridge for Breakfast, The Ordinary Life of a TTP Survivor

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