I'm new here so I thought I'd share my story. IIH is so rare that I don't often see much about it on these forums. I hope by sharing I might help someone else who has just been diagnosed! Its been a scary journey for me which I think might have been a bit better if I'd found someone who had been through the same thing so here goes!
Jan 2019 - I haven't thought much about my weight before, I've never really needed to. I first noticed a change in my body after having my second child in 2012, I had been less mobile due to a bout of post natal low moods and I noticed that I didn't lose the weight as quickly as I did with my first pregnancy. In my early 30's I also noticed that I had a bit more body hair and over the space of a few years I think I put on 3-4 stone in weight really steadily. I also had increasingly bad migraines and bouts of low moods and anxiety. I wouldn't say depression but I wasn't myself.
It came to a 'head' (you'll see why thats funny in a sec) over Christmas 2018 when the migraines I'd been experiencing became too much and I demanded that my GP have them investigated further. A neurology investigation determined that I have a rare brain condition called Idiopathic (meaning they don't know why), Intracranial (in my brain) Hypertension (Fluid) (IIH). Essentially they don't know why it happens but there's an increase of cerebral spinal fluid in my brain, maybe because my body is overproducing it or because its not being drained properly and this is causing me to have intense headaches and migraines. It can also lead to blindness and other problems. Studies show that IIH is prevalent in women over 30 who are obese and the advice from my drs is that I need to lose the weight to have the best chance of being healthy.
My first thoughts after the diagnosis?! On reflection, I really wasn't expecting anything to come of it. I thought my iron was low or something. It was a shock, I have to say because at just under 5ft 7inches and 14 stone, 90KG I hadn't immediately understood that I was Obese!! I have a busy job in property development/regeneration and 2 kids/a family, we're really happy and healthy so I thought I really don't have time for this. its not something I was immediately prioritising. Again I say -It was a shock. Once I got my head around what was happening and I realised that I was actually quite unwell I knew I needed to deal with it properly.
Whilst the offer of medication and surgical procedures etc exists, I feel strongly that at 38 years old I am not going to be the person who has a life time of illness and medical intervention ahead of me. I will make strong life choices as I always have and I will be well independently, without medical intervention if its possible...so here starts my changing lifestyle.
Why I want to get in shape
I went onto a few online forums where people with long term health conditions were chatting about their experiences and I noticed that people who have been unwell for a long time had become lethargic and negative about their situation. Understandably. People talked about how the Dr had given them this and that and it hadn't worked etc but over a few days and weeks I noticed that the same people talked about poor diet choices, lack of exercise and then criticised the medication that had been prescribed when actually its a package deal. No one thing will work on its own..its a wellness journey. People expected to be able to carry on eating and not exercising in the same way as they had been, add the medication and hey presto that would make them well again but it doesn't work that way. Change is necessary, not huge ones... just little changes make all the difference!
I realised that making healthy choices is within my control and losing 3-4 stone is actually a small price to pay for good health. I want to be the person who takes control of my health and make good choices for my future, so here I am ready to learn...
I'm always open to new conversations, tips, advice, questions...whatever so drop me a line...unless you're selling something then please don't bother.......
My Inspirations
My partner is a huge inspiration to me. Hes a wonderful person
I want to travel further and learn new things - we have so much to see
My kids are hilarious and I want to be able to enjoy life with them
Update: May 2019 - fast forward 5 months and I've lost 12 KG. I have another 18KG to go so the journey continues but I I'm enjoying the journey to wellness and feel like I've really learned alot about myself over these last few months. What have I learned? Well, I've learned that I can do anything if I put my mind to it. I've also realised that my health is really important. I've been off my feet for the last month but I've managed to still lose weight slowly. The changes I've made have been predominantly small ones, eat less and more of the right things, exercise more. I've focused on calorie deficit and exercising more when I've been well. Even with just half an hour a day of cardio per day, I notice that I lose more weight than just eating less calories with no exercise. I've taken up running, not something I ever thought I'd say but I'm actually really enjoying it.
My inspirations:
Watching others around me manage their health and seeing how they overcome challenges.
Seeing the benefits of the weight loss I've already experienced - my skin is healthier, I feel healthier and I'm getting back into my old clothes which is great.
Being more active with my daughter. I've been off my feet for the last month but prior to that, I was really getting out with her alot more. I want to do more of this.
Written by
Jod13
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Wow, what a lot you have been through! I love your attitude. We can't always control everything but we can help ourselves so much with the choices we make. And sometimes healthy choices lead to more healthy choices, like a virtuous circle. You're clearly a very positive and determined person - and an inspiration!
Great post. You are so right about our health requiring an holistic approach. You're obviously going through a great deal with your illness but hats off to your super positive attitude. I wish you every success x
Hi Oldfloss - Yes I would love to work up to that- thats the aim anyway. I'm aiming for 5k in July and then work my way toward 25k. Am I in the right place?
No I haven't posted it in the weight loss forum but I will. Thank you!
This is great, thank you. I managed to get to week 6 in March but have been off my feet. I should be able to get back to it at the end of the month so I'm probably going to start at week 1/2 and see how I go.... I'm nervous about my fitness slipping backward as I've been off my feet....we shall see!!
Thanks for the guidance - I'm clearly new to the forum!
I have to say the C25K app has been instrumental in my weight loss and in me enjoying running. I hated running before I found the app and then it guided me to this forum! Its brilliant!
Just take it gently.... I ran a HM in March and after two weeks on the IC with a pollen related racking cough, I am now back to building up again with 1K runs!!!
We get there though.... Listen to your body...it is your best guide
Thats great advice...it really is. I'm terrible at taking things slowly. I'm an all or nothing kind of gal and I tend to overdo things....I'm learning that I need to slow down and build up to things. Thanks for the FAQ link - thats super helpful!!
Welcome... great post... and many congratulations on the start of your weight loss journey... if you can do that, you can do this. Enjoy the road to that 25k... you can do it.
Thanks... it’s my reminder to myself to not go back to my old ways.
The emphasis in that run title should always be on “fun”. You’ll run it, no doubt, but if you’re not ready to run a full 5k by “race” day, then just have fun running with a bit of walking. Many people do that, and there’s always another 5k run. When you get to that start line, consider it a celebration of your journey to that point... that’s all race day really is.
Thats really helpful advice UnfitNoMore , I've found the C25k app really good in that sense. I've noticed that if I pace early on, make sure I get my breathing right then I run further for longer. I used to bolt out of the gate, try to run fast early on but now I've learned to start slowly walking and then jog lightly until I feel like I'm pacing and then steadily build up a bit faster. On run day, I'll take the same approach and see how far I get. Walking is always an option - its all about finishing rather than the time for me at the moment... thanks for taking the time to reply!
Perfect... negative splits are the way to go, start easy end fast, if it’s not there on any given day then fast is slower, but the run is always fun. Starting fast and clinging on is, for me, nowhere near as much fun. I like your mindset and look forward to seeing how far you can take this.
What an inspiration, thank you for sharing your story. In our busy lives we seem to live on ‘small sound-bites’ of shallow messages. It’s just lovely to hear about real experience.
I’m running for the first time ever this year and love the sense of achievement and the fact that I can discuss running with others and feel part of a ‘club’ that I never thought possible.
Thanks Poppys1strun Good luck with the running, I too am running for the first time and its a huge achievement. The C25k has been a brilliant app to help me get going and I've learned so much about myself. When I first started, I was running from the moment I stepped on the treadmill. Now I've learned to start walking and increase my pace slowly concentrating on my breathing. Its really helped me get my confidence. Thanks so much for the kind words, keep in touch!
This is a really inspirational post Jod13, thank you for sharing it with us. You have a great attitude and approach to your wellness journey.
Having previously got several weeks into the C25K you already know what it is all about. Continue to listen to your body, go at your pace and take extra rest days as you need to. I’ve reached W7 but on advice I have stepped back the pace and spaced out my runs in order to incorporate strength and cross training exercises. I struggle with muscle tightness and wasn’t recovering enough between runs before being due to run the next. My journey might take a little longer now, but I’ll get there.
C25K and this forum are amazing. You will get so much advice and encouragement here. Keep posting so we can all cheer you on 😊.
Thanks Delly-dot, thats helpful feedback. I will take it easy as I'm trying get back into it, I'm also trying not to be so hard on myself. I find myself thinking, I've lost 0.5kg - that could have easily been 1kg if I was able to run which frustrates me. I think this forum is helping me express my thoughts outwardly so by writing it, I'm checking myself because clearly those thoughts aren't helpful. Also, as I'm writing it I'm thinking - don't be daft Jo, just take it easy so its kind of self correcting. Seeing that you've gotten to W7 and had to slow down helps be realise that I'm not on my own. Others are going at different paces and its a marathon not a sprint. Thanks for the encouragement!
I agree! As I write posts/replies I also find it clarifies things in my head too.
The C25K process has flexibility built-in, but I think you need to have a hiccup in your training before you become aware of how individual you can make it. I think we also need to credit ourselves that no matter where we are now, if we are still running then we have all moved on from the first week, so we are making progress!
I’m running today for the first time since last Tuesday. I’m just going to take it easy and see how it goes. It’s lovely and sunny so hopefully that will help! ☀️ 😊 🏃♀️
Great post, wasn't aware of this illness. Seems like you have a good handle on it now, be very proud of that. Even if it still gets you down, which of course it will at times.
You're being proactive and trying to help your situation. Very inspiring.
Good luck on your journey and keep up the couch to 5k podcasts they will really help with your family 5k run in July xo
What an amazing story, and a fantastic attitude. Everything you say about it being what you actually put in your mouth on a daily basis is soooo true. Well done on your weight loss and I know we will be seeing you on here telling us how the rest is coming off. Best of luck and I look forward to following your story x
Thank you Runners. Its surprising how far 1500 calories goes too isn't it. I get to 1200 most days and struggle to get past that unless I'm going out for dinner or my other half is cooking lol. I'm loving the C25k, its really helping me with my weight loss. I'm also still loving my food and enjoying finding low calorie options that take good! I can't deprive myself...foods like a celebration in our house.
Thanks Jen302, that’s really kind of you. I’m feeling quite empowered at the moment. Good days and bad but I’m out visiting the lovely sites of London today for a few hours so life is good!
Great post. Love the way you have written it, lots of information but with lots of nice personal touches too.
Especially love the way you have phased how you can't expect just one thing to change situations like this, it is so true. Changes (plural) need to be made, and sometimes these take longer to take effect than we would like, but you just have to stick with it and keep on going.
Good luck with the c25K. I loved doing it last year (July) and am still running now, around 15km a week in one or two runs. Looking forward to your updates
@sunshinefish great name and lovely to read you’re doing 15km a week. I can but dream of that at the moment and reading that you’ve achieved that is really inspiring. Often it’s the journey that excites us the most so it’s great that your journey didn’t stop at 5km. Thanks for the encouragement! Good luck!
It will come! Slowly but surely. I even got the hubby into running, which is great, although with youngish kids we can't run together (he is also faster than me, but I do longer distances than him, so it all evens out )
What wonderful post Jod13! You could've spiralled down mentally and physically but instead you saw what needed to be done, have a positive attitude and are not looking for a quick fix or the magic pill. You are an inspiration and a great example of how we are in control of our life, even when crappy things are thrown your way. Congrats on how far you have come and welcome to our forum 😊
Thank you SaskAlliecat, thats very kind of you to say. Best wishes to you too.
You've described a poignant, sad and yet highly inspirational story. There is so much to relate to and to admire about the decisions you've made. I love the way your generating your own way back and as you become fitter and well, keep telling us how you're feeling.
Sorry you have been off your feet recently, and sorry to hear about your obscure condition. I loved your post and your attitude. When you get back into the Couch to 5k programme and keep posting on this forum, you will find lots of lovely positive support.
I agree with you that on some forums it can get you down, and make you depressed about any condition. This was the first forum I've ever attended that held your hand (so to speak) and helped you up when you had a 'bad run' or a bad day.
So, congrats on your weight loss over the last 5 months, and you are on track to be on target by the end of the year... and if you 'learn to run' (which is what I have done - literally from the sofa).... your life will be richer and healther and I hope it will truly help your condition without needs for drugs, stents, drains etc etc (or whatever they might throw at you).
Keep in touch with us... and all the best on your 'life' journey.
PB - that's a truly lovely message, thank you. I'm going to give myself another two weeks before I get back on the C25K horse. Then I'll start back at week 1 and see how I go. You're so right, I've received so much support. People are so very positive and look to lift you up rather than pull you down. Its a lovely atmosphere and I'm so glad that I found the forum. Thank you again x
This is a fantastic post, I agree with everything you say about caring for you health instead of asking the dr for health care❤️ I hope you are back on your feet very soon, I enjoyed your post, please keep us updated xx
Hi Jod13. I’m fairly new here too but have just reached my target W9R3. Following a bereavement I have found running to be a positive chance to get through life. I also have some information about cerebral spinal fluid... have you found The Perrin Technique? I used it some years ago following a chronic fatigue diagnosis. It is worth Googling to see if it might help. The technique developed by Ray Perrin is particularly designed to remove excess CSF. You are doing so well- keep it up. Slowly slowly catchy monkey! That’s what I tell myself. The guys on this platform provide such positivity it’s fantastic. Good luck
Oh my gosh Scooby2545 I've just watched a you tube video, youtube.com/watch?v=_ZK2Mtk... there's definitely something in that. Thank you for sharing this, I'll investigate it further.
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