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View Full Version : From Cancer to ALS/MS - my health anxiety journey and lessons learnt



devonbevon
25-01-13, 23:05
Hi all,

I am keen to write down my personal journey in the hope that by being open and honest and sharing with you what I have learnt that it might help put some of your minds to rest or at least start you on the path to recovery.

I'll start by saying this is the first and hopefully last time I experience health anxiety. It is a truly awful thing to experience - it can be completely crippling both emotionally and physically. It takes its toll not just on you but those around you. Its hard to explain to others as they just see it as 'silliness' and 'self-absorbed behaviour' - which to a degree it is, but it is by no means deliberately experienced.

I just turned 40 about a week ago. I am a mother of a two year old and a one year old. I work full time (up to 50 hours a week) plus take Mondays off so I can spend time with my children (this means I work extra hours on the other days).

I am typically an over anxious and worst case scenario kind of girl at the best of time but have always had it 'intellectually' under control. I have a wonderful, supportive husband but last year was a very tough year. Returning to a demanding job, adapting to motherhood, being in my first year of marriage. I was constantly stressed, tired, but kept going and going. There were weeks of high high anxiety with lots of tears and arguments but I would plod through. I rarely got sick even though my kids were at childcare etc. I was like a working mother on Energiser Batteries.

Then I took a couple of weeks break in November. And the cracks started. I foolishly started to reflect and analyse my year and more importantly how I felt physically. I suddenly realised how tired I was. How much I ached all over. And so began my health anxiety journey.

First I demanded blood tests to check my vitamin levels. From that I learnt my Vitamin D, B and C was very low. I pumped myself full of vitamins but at the same time I began to get a feeling that there was 'more' to the issue. With the added worry came more symptoms. Pain in my breasts and underarm. Oh no - breast cancer. A mammogram cleared that up. So what else - maybe its lymphoma or leukemia or bone cancer? So it continued and it became a snow ball effect. I began moving from one disease to the next and exhibited new symptoms once one disease had been ruled out. Finally mid December I settled on MS (or so I thought) - by then I had calf twitching, shoulder twitching, leg jerking, hand tremors, and finger jerking). I should point out I still have all these symptoms but I am in a far better place.

My MS fear was trumped when i started to internet surf. ALS aka Motor Neuron disease was yet another option!

The hard thing to explain to others is that the symptoms I experienced and am experiencing are REAL. My wrists ache for hours at a time. My leg lifts itself off the bed every 5 minutes. My husband can see the pulsating in my shoulder. I triple click everytime I use the mouse.

Anxiety is such a powerful and overwhelming feeling at times. I can only begin to imagine all the adrenaline etc pumping through my system and contributing to how my body is reacting. My intellectual side knows that stress can flow over in physical ways. The pyschologist ive started seeing has told me that she has seen hundreds go through the health anxiety journey I have. But there is always that inkling of doubt that goes with people like myself. Show me the proof, but even then, perhaps something was missed etc.

So in the past week I have had an MRI, a nerve conduction test and an EMG. It has been a tough week. As my husband and the rest of the world suspected, nothing is showing up neurologically. Still my symptoms exist (but thats not surprising given ive had two months operating on high alert).

I know my journey isnt fully over but I am determined to take control now. At the same time, I wonder if health anxiety is more frequently experienced by those that have a strong desire to always have control. Because getting sick or diagnosed with a terminal disease is the ultimate loss of control.

What I do know is that right now, at this point in time, I appear to have nothing neurologically wrong with me, I dont have breast cancer, I dont have bowel cancer etc. At this point in time. This may change in six months, in a year. I may always be healthy. But RIGHT now I am okay and need to learn to LIVE FOR TODAY and enjoy the SIMPLE things. Enjoying trips to the park, the breeze on my face, etc.

So what have I learnt from all this:

(a) That health anxiety can be all encompassing and put your life on hold and you can miss out on so much. I dont even remember Christmas this year because I was mapping out my imminent death in my head, worrying what would happen to the kids, ensuring I had life insurance etc. Crazy stuff.

(b) Don't spend your time chasing illness or disease - if it is serious you'll soon know. More often than not, there is a basic and common explanation for what you are experiencing.

(c) Don't spend your days on the internet - spend your days with your family enjoying every moment you have with them.

(d) If you do need reassurance, come to sites like this where you are amongst friends. Dont go to sites where people with diagnosed MS, ALS etc are. I can only imagine how they feel when health worriers join their site and start on their paranoid journey. These amazing yet unlucky people are experiencing what we fear most and we dont need to contribute to their problems.

(e) Most importantly anxiety exhibits itself in so many different ways. Believe that. Trust that.

So I wish you all well. Stay positive. Live for the day. Enjoy what you have. Recognise your limits and how to manage your life so you avoid reoccurrences of this dreadful 'illness'. This year for me will be about pulling back my work hours, taking time out each day to exercise and relax, and learning to live in the moment rather than mapping out the next 30 years.

So I leave here twitching, jerking, tremoring etc. Hopeful it will diminish over time, but confident Ill be okay. And knowing i have bigger pyschological issues I need to deal with that have brought me to this physical point.

Love to you all

DB xx

Stands mum
25-01-13, 23:19
Great post. :)

devonbevon
25-01-13, 23:50
Thanks i remember how much one or two posts helped me

illgetthere
25-01-13, 23:54
Thank-you so much for telling me to read your post was very reassuring I hope 1 day my mind can shift its pattern to the way this post came across being a mum is a beautiful thing I love my children dearly with every once of me that exists I just wish there was a a guarantee that I can have to watch them grow up but there isn't one and that's what I find hard snd that's why the checking behaviour comes in yo it I think if I constantly check I will catch what I've hot soon and will get help with it and to think I was fine till November 2011 a massive panic attack and boom my life was robbed sling with everything else I thought was solid in my life
Love and best wishes vicky xxx

devonbevon
26-01-13, 00:07
I too want that guarantee. I guess we have to focus on what we have right now and plan so they are loved and secure whatever happens. I know the more i worry the less useful i am to my kids! being a mum makes everything feel more intense from my experience. Most people stay healthy and see their kids grow up. Lets be the average person in this case ;-)

illgetthere
26-01-13, 00:29
Sounds a nice thought for a moment I felt a calm wave go threw me thanks x

sarahsarah
26-01-13, 01:09
What a wonderful post, absolutely inspirational. I can see myself in so much of what you have written. I can see myself coming back to this post often. Thank you

All the very best to you xx

priestbridge
26-01-13, 01:45
Thankyou for this post,

devonbevon
26-01-13, 07:52
Always happy to chat with people xx

andrea15
26-01-13, 22:28
Great post. Made me think

Andrea x

devonbevon
29-01-13, 00:21
Yes. The journey isnt over yet though im sure. lol but we keep working on it

katielou80
29-01-13, 08:37
fantastic! i can relate to it all, i have 2 kiddies and work too, been married a year! lol its hard, and i totally believe in the words that you wrote about control......im a very organised person and my best friend told me that HA is something you cant control, thats why its ruining me. well done you great post xxxxx

Rachel1984
29-01-13, 22:34
Great and soothing post!
Thankyou:)

rb1978
30-01-13, 19:32
Thank you for posting this. You've summed up so much perfectly.

devonbevon
31-01-13, 23:21
I often refer to it myself lol ... remembering when I was at my most rational and calm :)

Seanydee
01-02-13, 00:15
Excellent post well done,I really wish I could ignore my symptoms and just get on with my life rather than letting my health anxiety live my life for me xxx

devonbevon
01-02-13, 06:42
I believe health anxiety is a form of ocd im trying to obsess over other healthy stuff instead eg prepararing birthday parties and photo albums

devonbevon
06-02-13, 12:54
So having a bad day... my thumb has gone crazy.. beating/jerking for well over an hour after using it.... cant pick up a pen etc.. yet have full strength... hate it :(

lisa1975
06-02-13, 13:26
Excellent post :)

matrix123
07-02-13, 16:17
Very good post...as many others here I've settled at MS also. I'm not brave enough to convince myself and do some tests, but it all started 9 months ago with weak feeling in my left side.

I'm much better now although my left side still doesn't feel the same as the right, but it seems there's no timeframe with anxiety. It can take even years for the body to feel normal. It took several years for me to get so bad that couldn't go out of bed and it will need time to recover...

pepperutchie
11-02-13, 18:49
thanks for this post very inspiring,for i am now strugling with all the uncurable disease there is

supercooper
24-02-13, 19:26
Thank you you made me see I`m not alone xx

S11taylor
21-04-13, 05:35
I am new to this site and wow! It's like you took the words right out of my mouth!

priestbridge
21-04-13, 22:54
Thankyou!

Bekzie
21-04-13, 22:59
Great post with some brilliant advice :)

devonbevon
24-09-14, 10:12
I just read back to get some of my own advice lol

PanicBGone1
24-09-14, 15:22
Awesome post! :)

Needsomerelief
05-10-14, 11:17
Thank you for this post. Really related as find hard too to believe anxiety can cause so many physical symptoms but we all in same boat and your post can really help others. Good luck and thanks again x

lozzie02
05-10-14, 19:08
Thank you so much for posting your journey and you are so right. I have been suffering so Badly recently and your words have just lifted my spirits. I am going to write them out and read them to myself everyday until I pull myself out of this. I have written them on my phone so no matter where I am I can read them if I start to worry.
I think single handedly you have cured me........well like you said for now anyway!!

Thank you x x x

Avasmummy_x
05-10-14, 19:41
Thank you for this post hun. I'm just 21 and have a 2year old.
I've always been perfectly healthy till my pregnancy where I had many complications causing me to be very ill almost having a stroke and loosing my daughter, this was when my health anxiety begun.

I've diagnosed myself with a dvt, pe, lung cancer, copd, heart attack, heart disease, breast cancer and currently brain tumour. All within the space of 2years. All stemming from me having severe pre eclampsia.

It's tiring and I've had enough. I've had an mri today of my head neck and sinuses and even though the head symptoms are still here I'm feeling breathless again and coughing making me paranoid about lung issues again or pe. Why is it never ending? I'm the most poorly 21 year old ever!

devonbevon
05-10-14, 23:12
Hey lozzie im glad my words struck a chord. I will never underestimate the power of anxiety after my first bout. I think the biggest clue to something being anxiety related is that the illness travels through the body and the symptoms constantly change or come and go. Nowadays when I feel a twitch etc I just see it as a warning sign that my life is too stressful and I need to reduce or eliminate the stressors xx

---------- Post added at 22:12 ---------- Previous post was at 22:04 ----------

Avas mummy my heart goes out to you. A complicated pregnancy is a huge trigger and would most certainly have been the trigger for your ha. Ha is incredibly powerful and is only overcome when you accept anxiety can cause a myriad of physical symptoms. Everytime you feel a wave look at your beautiful girl and remember you got through it. That two years on despite your body being on high alert with anxiety you are largely physically healthy. I too get headaches bad necks and its all linked to holding myself tense. Yup anxiety again. Ill never forget wasting a xmas so caught up in the ha scare. I dont remember my little girls chuckles or delights at the festivities etc. I was too busy living out how incredibly painful the end would be for all concerned. If I do end up ill one day I know I want to go out smiling and enjoying the little moments. In the meantime ill keep consciously practicing most likely scenario than worst case scenario. Motherhood makes us vulnerable. Know you arent alone. But I bet you are a beautiful mum and a pretty healthy one at that xx

devonbevon
16-05-16, 12:02
okay so after a really really good patch my health anxiety is back.... not sure the trigger but vibrations in my right ankle / leg are driving me crazy and making me worry about MS again... im trying to contain my obsession but struggling tonight :(

KatiePink
16-05-16, 16:35
okay so after a really really good patch my health anxiety is back.... not sure the trigger but vibrations in my right ankle / leg are driving me crazy and making me worry about MS again... im trying to contain my obsession but struggling tonight :(

How have the last two years been? Mentally and physically.
Reading your post helped me, I'm in the height of ha right now and can relate to it all.

You're right we have no guarantees in life, if it is something serious we would soon know about it, no amount of fear or worry is going to change that. Live for each moment and enjoy the little things, I hope you can get back to feeling more positive very soon x

Regnardgreeb
16-05-16, 21:43
okay so after a really really good patch my health anxiety is back.... not sure the trigger but vibrations in my right ankle / leg are driving me crazy and making me worry about MS again... im trying to contain my obsession but struggling tonight :(

Don't worry! I get those things as well, sometimes it feels like my cellphone is calling.

How often is it happening? Remember you have had these things before and you even went through an EMG. You dont need to worry.

devonbevon
17-05-16, 07:46
Thanks :) health anxiety is a bugger. Having gone through it before i know how powerful the mind can be. But then there is this 1% of you that thinks... maybe this time there is something wrong. I think the saying dont chase disease holds true. If its real youll soon know.

The last two years have been good but think balancing an intense job (where i worked 60 hr weeks and there is heaps of travel) and small kids has got to me. My stress levels are through the roof, im forgetting stuff (even stared at my daughter trying to remember her name :/) etc.

Always happy to chat to anyone re my journey to date x

---------- Post added at 06:46 ---------- Previous post was at 06:45 ----------

Been happening for a few weeks... almost constant in right leg (constant but turns on and off every few mins)

Lizziloo
17-01-18, 17:45
Thank you for this post x