Welcome to another week of amazing guest posts from those who chose to participate in mine and Amy’s events. Today I get to share with the Laura’s Confessions of a Spoonie, I hope you enjoy!
(amongst other conditions) and blogs about her experience over at Laura’s Pen. Laura lives in a flat in London with her partner, where she has made it her mission to befriend all the local cats.
What condition/s do you suffer from and when were you diagnosed?
This will be a long list! I suffer from ME/CFS, Lyme Disease, Endometriosis, Fibromyalgia, Borderline POTs, Hypermobility, Hypothyrodism, Pernicious Anaemia and probably Dry Eye Syndrome too. I was diagnosed with the thyroid condition, ME and Pernicious anaemia in my teens. I eventually went into remission from the ME as I entered my twenties, but at 25 I became very ill again. A year later I picked up the ME diagnosis again. At 27, after a year of tests and chronic pain, I picked up the Fibromyalgia diagnosis and in the last year I’ve been diagnosed with both Lyme Disease and Endometriosis.
What are the main symptoms you suffer from?
FATIGUE. Debilitating, life-halting fatigue. This is by far my worst symptom and dominates my life. However my other key symptoms are chronic pain and cognitive difficulty (partly down to the fatigue!)
What 3 things have you learned about your condition since being diagnosed?
Which one? Haha. (I am genuinely laughing)
1. The importance of resting/pacing. A lot of people with ME get told “don’t nap”, which I think is really unhelpful. All you’re doing then is running on adrenaline, which means you’re using more energy than you have and you aren’t going to get to sleep very easily. Actually, the advice should be to rest (lay down in dark quiet room for 20-30 mins. Set an alarm) BEFORE you run out of energy. For me, this means I have four or five rests a day, about once every hour and a half.
2. Looking after your mental health is very important. I shied away from letting doctors know about any mental health symptoms because of the stigma around some of my diseases being “all in your head”. When the chronic pain set in, I broke, I became very depressed. I suffered for months before seeking out the help of a local NHS chronic pain CBT group. They weren’t trying to fix you, just to help you cope. And they told me that depression and anxiety are normal responses to being in chronic pain or chronically ill. I wasn’t failing, I just needed some help.
3. There are a lot of conditions out there that doctors don’t know enough about. I often joke that just once I’d like to get a diagnosis for one of my core conditions that a) doctors believe in b) has a treatment c) doctors believe in the treatment. I was really shocked with endometriosis that this isn’t the case, when it’s a disease that can physically be seen by a surgeon. I found myself in a position of feeling the need to politically campaign/raise awareness for all of my conditions. I’ve come to realize that most chronically ill people probably have to put up with some degree of stigma and misunderstanding.
In what way has the NHS supported or not supported you?
My GP is brilliant. I went through a lot of GPs before I found her and now I’d be scared to leave her. She listens, we have a dialogue where we both respect each other’s contributions to the conversation. She believes me if I say a symptom is really bad because she knows me well enough to know I don’t normally complain too much.
I have a very mixed experience of the NHS. I’ve seen many doctors trying their best to help me. I’ve seen some doctors label my illness as psychological and then expect me to just go away and magically get better (I’m pretty sure that’s not how mental illness works either).
A lot of doctors are restricted by what the people at the top allow them to do. So if we’re told CBT and GET work for ME, that’s all we get offered (this has been disproven in the reanalysis of the PACE data), if Chronic Lyme Disease doesn’t exist, you don’t get any treatment, and if ablation and hormonal therapies are considered effective for your severe endometriosis, then you have to find yourself the doctors who know that excision surgery is the most effective option.
I think the system is broken and the Government is breaking it more, but there are doctors that under the weight of all the bureaucracy are still doing the best they can for their patients.
What is the hardest part about your illness, in your opinion?
The loss of the person I was. I had been to University, got a job in journalism. I was travelling with my partner to different spots across the globe in my holidays. I was a high achiever and loved my life. Having that all taken away, was incredibly hard, having to accept the person I now am, ailments and all, was harder but did make the loss a lot easier to deal with. I now mostly spend my time in my flat, resting to get through a day not doing much at all.
List 3 phrases you hate hearing off other people about your condition.
I’ve been very lucky that I’ve very rarely had comments that I hate. I generally try to understand where the person is coming from and if they meant to be rude. Often, I find, people are just trying to understand and I don’t want to shut down that dialogue.
But.. if I’m going to make a list
When are you going to get a job/go back to work?
When will you be better?
You don’t look/seem sick.
List 3 things you wish people would say/do instead.
Actually I don’t like to talk about my illness in person. I’ve actually blogged about this in a post called Why I hide my illness. In person I find it hard to find the right words to explain things.
I’d much prefer a message after I write a blog, a question by text, or a comment in person that shows they’ve been on google/my blog or just a text to ask if I’m well enough for them to come round or whatever.. Actually, a lovely friend of mine sent me a care package after my endometriosis diagnosis and investigative operation. That was so sweet and cheered me up no-end. The selfish part of me says “please everyone send me stuff!”, but that’s the child in me.There are some lovely companies out there putting together gift boxes for the chronically ill that friends/family can send them though.
Do you have any cheats/tricks to get you through the day or to help you complete certain tasks?
My mini rests are key. But I also have an endless supply of hot things. Hot wheat bag x 2, hot water bottle, heatpatches. I also sleep with ice packs under my shoulder and constantly have something called an Actipatch on the back of my hip.
Have you picked up any new hobbies or activities since being diagnosed that you didn’t think you would?
I’ve tried a few new and a few old ones. Knitting and crochet were good but I kept leaving it for ages and forgetting how to do it. I find the learning very draining, so that’s a problem. Art drains me too much (that’s an old hobby of mine). Writing and blogging in small chunks is my thing now. But I was a journalist so that’s not new!
What do you do? Work, study?
Neither, I’m too ill unfortunately. I have a novel that I’ve been very slowly writing since I got ill. I’m still not through the first draft. And I blog!
What are you plans for the future?
Finish the book. Get myself better than I am. Get on with life!
Is there anything you would do differently since being diagnosed, and why?
I think my priorities have changed. I used to value perceived success above all else. Now it’s more about personal success. Doing what makes me happy and having a go at the things I want to have achieved in life. Do what makes you happy, not what you think you “should” be doing.
Has your illness taught you anything about life?
To value the small things. That it’s not how you get to a goal, it’s the fact you got there. That you need to make time for what makes you happy. I’m very slowly writing a book that I don’t think I would have even started if I was still well. I wouldn’t have stopped for long enough to consider it.
What advice/information do you wish you were told when you were first diagnosed?
I’ve blogged about this too!
Be kind to yourself. Becoming ill is very very hard, especially when you suddenly discover that doctors don’t have all the answers. You will spend a lot of time telling yourself what you “should” be doing, calling yourself names for not doing those things, and pushing yourself to do things you can’t.
I was given this piece of advice much later on: if you catch your inner voice saying horrible things, putting unrealistic expectations on you, generally being nasty then STOP, take a deep breath, and ask yourself: “What would I say to a friend?” Then tell yourself that. I found the more I did this the more the friendly voice kicked in before the nasty one got a chance.
What would be your main piece of advice for people who has just been diagnosed with your condition?
Find yourself a support group online. There are people out there who will understand your journey, who will be able to provide you with invaluable information about new symptoms and how to deal with them, who will support you through tough times. If you don’t like the one you joined, leave it and try another. I find each group has its own personality and offers something unique.
- If you havent already, go and check out Amy’s blog and read her post recent publication for Confessions of a Spoonie by clicking here.
- On THURSDAY make sure you keep your eyes peeled on Amy’s blog Living with ME as she will be publishing another guest post for the Outside Looking In event.
- On SATURDAY it’s back over to my page for my next guest post for the Outside Looking In event.
Blog you later »