Volunteers' Week: Martha's Story
Martha is one of our Helpline Operators who answer calls on our Patient Support and Information Helpline
A lot of the time I don’t really know how I got here. I have volunteered all my adult life in one way or another. Guiding, Scouting, charity, events, if I could help I happily did, all without having a clue what the pituitary gland was, or, how much my life would be turned upside down by what felt like a bunch of symptoms that were all in my head. I bet that’s not an unfamiliar feeling for many reading this. Then fast forward and here I am, a Helpline Volunteer for The Pituitary Foundation on my days off from work, and whenever I need to tell people in my life who do not know anything about the pit gland, cortisol or adrenal insufficiency, I have a whole routine including hand gestures.
My diagnosis was one of those slow ones where you just keep going because you have to and then you find you can’t keep going anymore. I had done the googling and I’d found out about Cushing’s and I, without all my medical training, decided I had it, but it took a while for others to agree with me. After various tests and MRIs and we think about 8 years of slow growth and decline, I was proved right and I had the op in April 2017. In the run up I thought I was going mad and finding The Foundation and its website of information, stories and the Helpline helped me through a few different situations. One of them being quite soon after diagnosis and being really confused about whether I was, or, was not ok to be near someone with chicken pox! Large issues or small The Foundation would do what it could.
In the run up to my op when I was technically undiagnosed, but we all had a pretty good idea of what it was, I needed to prove to myself I was ok still and I did two triathlons and a ‘Tough Mudder’. About a month after the Tough Mudder I reached the point where I could not walk up a slope. In hindsight I think they probably weren’t the best idea but sometimes when you need to get back in control you do some strange things, plus I had a lot of cortisol running through me.
Withdrawal from the high cortisol was almost harder than the run up to the operation as I was focused on getting the op into the calendar and just getting through it whereas withdrawal left me incredibly lonely with no immediate family / friends really understanding what was happening, especially as I looked fine. The Foundation and their support helped then too – just knowing others have been through what you have been through and that whilst it takes time it will ease and lift, and it will be better. For me I watched tv and did a lot of puzzles as they gave me something to do without it being too much or mattering if I took 20 minutes to put in one piece, each bit bringing satisfaction.
Once that ease came I wondered what to do to return the help I’d had, I had worked with my workplace to change from fulltime hours to flexible hours that allowed me Friday off – so I could recover before the weekend rather than use the weekend to recover – after a time those Fridays were working well so I decided to volunteer. Now we are a year down the line, and I love it. You never know what each phone call will be about and I am always clear that I am not a medically trained expert but I will listen and I will usually ‘get it’ and sometimes that is all that a person needs, it was what I needed when I rang. If more is needed that’s where The Foundations head office kicks in. An amazing group always doing what they can. I cannot wait until the next chance to meet with the team and all of you in person. I hope that isn’t too far off for us all.