We are all on this journey.
But sometimes we need to be on our own.
This blog is me. Raw thoughts and feelings. But for the last year or so, I have struggled. I have reached out to the FB MS community. My name, my face. Here I am one of you, anyone.
So, this last year… Stressful job. Stupid hours and ambitious, relentless people. While studying, working full time, pre teen and teen kids and marriage.
Insomnia. Soul destroying, energy sapping insomnia. Tired and asleep by 10, waking by 2, lying awake until 5 and solidly asleep by alarm going off at 6. 3-5 times a week. Going out to the lounge and watching crap TV, hoping to drift off.
Foggy brain. It is more than just forgetfulness or old age. Confidence sapping. Loss of trust, in my own mind.
Tingling and twitches. Eye twitches. Surely everyone can see? Waking without feeling my hands and sometimes my feet.
Is this the last job I can do? When will my stupid disease be so obvious to others as it is to me? I lost that promotion, is it because of me or do they know? Is my brain fog as limiting as I fear?
Fears. Three years after dx I was still searching for acceptance. And sleep.
2013 draws to an end.
One child leaves primary school. Another is almost taller than me. The third can almost fit my shoes. My pretty shoes!
Twelve months ago I couldn’t see red Christmas lights and the headache couldn’t be fixed.
So, almost a year after diagnosis, how do I feel? Relaxed and positive and grateful.
Things could be worse. My relapse was just that. Enough to get me diagnosed, and encourage me to a better lifestyle. Having given up saturated fat, I am now a size 8-10 from a 14. No girl would complain with that. I don’t even crave hash browns or chips and gravy anymore. I am enjoying salmon and vegetables. Even those that come in salads. my dog is happy with regular walks and my back is happier with strengthening through Body Balance – a cross between yoga, pilates and tai chi.
My down days are when I think of the what ifs. What if I cant think as clearly and my brain goes. What if I can’t move as quickly and think as quickly as I like. What if my body is so unreliable that I can’t plan anything with confidence. What if I fall within the gap between being able to perform my job at the level I rose and salary I earn, but can’t qualify for my invalidity pension. What if I can’t afford to provide for my family. What if the only tangible option is to die and leave them my death benefits.
then I snap myself out of it and focus on the positives. Nothing will happen overnight. I have a wonderful family and fabulous twitter role models. And a good attitude overall. And have time to plan for alternate income streams – a self funded early retirement if you will.
i am grateful to so many and for so much. And the advances in technology, medicine and natural therapies is progressing all the time. the longer I and we stay as healthy as we can, the more time we give others to kiss multiple sclerosis goodbye.
Insomnia and fatigue. The former started 12 years ago, on and off. Times of stress. Times when my brain just needed those hours in the middle of the night to process.
The fatigue, since I can’t remember when. I remember sleeping most days, but blaming it on partying all night. Days organising a dinner party with a nana nap in the afternoon. Studying, well a couple of hours at the books, an hour with my pillow.
when did this all begin? At what point should I have seen the symptoms?
In 2004 I was pregnant. And exhausted. Terribly so. Blood test confirmed anemia and b12 deficiency. But was it more? It was only months after an optic neuritis attack.
In 2005, with 3 kids, again I was tired. Terribly, terribly so. Unable to get out of bed some days. Was this a sign? Of looming MS or just being a mum?
I can’t remember a time when I have had energy. To burn. Adrenalin is easy. Create the deadline, grab and harness the energy. But once the project is delivered, exhaustion.
i love my husband and family. I desperately want to show them how much. Give them the energy they deserve.
not really the blog I planned. But from my heart.
Driving to work in heavy fog, I realised that is how my life is now, diagnosed (finally) with RRMS. Not seeing where or how bag the next bump is, how far to the next bend, or when the fog in my brain will finally lift for good.
but with 6 months since my optic neuritis, and six months since my MRI and formal diagnosis, there are some good wins. Six months relapse free. I know that isn’t much to some, ulna bragging for others. But, I will take it as a win. And I am aiming for another six months. To see Christmas tree lights with red flashing (other optic neuritis sufferers will understand).
I have taken multiple sclerosis to kick me up the proverbial in terms of looking after my health – to the extent I can. Drinking water. Taking my iron every day – the side effects are nothing to CRAB drugs so I have stopped complaining. Cranberry supplements for UTI and glucosomine for joints. And heaps of fish oil. And heaps of vitamin d. I haven’t missed a day. Oh, and SSRI to get my stress levels in check. Love that Chillax feeling.
Trying to meditate and this week, for the first time, this TYPE A personality meditated witclearer mind for a couple of minutes. Big win.
Strangely, the easiest thing to give up was saturated fat. Easy choice – chips and gravy equals wheelchair. No fat milk no butter, nuts and dried cranberries for snacking. Low fat meat a couple of times a week, chicken and fish the rest. 9 kilos lighter. Skin healthier.
So, these first six months have been a head game. Angry, depressed, confident, anxious, relieved, scared, grateful. Looking forward to kicking butt for the next 6 months.
My life isn’t change with my MS diagnosis. But the way I view my life changed.
I take the stairs. Not because of slow lifts, but because I enjoy being able to. At work, I can chose the lifetime or chose the stairs. I feel the muscles in my legs. It feels good.
I gave up fried food. Chips and gravy. Hamburgers. I miss them. Apples, bananas, fish just aren’t the same. But giving up fried food has had a benefit. 10% body weight just gone. Waist has returned. Cheekbones rediscovered. Jeans fit. It feels good.
my brain is clear. I can read, recall, think and analyse. I don’t take it for granted. A month ago I read a page and forgot what it was as soon as the page was turned. I am loving the clarity of thought. It feels good.
Thanks to MS, I have a chance to live again. To see my life through new eyes. And that feels good.
Sometimes I wish multiple sclerosis had defined symptoms. Like a broken leg – bone is broken/bone will heal. Optical neuritis impairs vision, vision will heal.
But no, MS is a stupid disease that has many flavours. So, even though optical neuritis is my main symptom (ie, what triggered the MRA and spinal tap), I also have depression (but who hasnt), fatigue (show me a mum who isnt) and foggy brain (over 40 anyone?).
But lately, my right wrist is being ‘difficult’. Grab a bag and it gives way. Clicking bones. Not all the time, but enough to make me worry. Is this the beginning of the end? Or is it just old age.
Essentially, for the last 15 years, I’ve worried that any headache was the next sign of MS and my husband would say ‘it’s not a tumor’. That has been our catch-cry for dont be silly, and get over myself. Now, with a solid RRMS diagnosis, its not a tumor, but could it be another flavour of MS.
And that plays with my head.
My conservative GP sent me to the dietician. I ‘chose’ to be gluten free and have chosen to follow some hippy diet to cure my MS.
Ignoring the judge mental undertones, I explained low sat fat to the dietician. I also explained that I will continue to eat low fat red meat due to underlying anemia. She had never heard of swank. But there was nothing wrong with fish a couple of times a wee, or eliminating sat and trans fat. The vitamins (fish oil, iron, cranberry, vitamin d) are all sensible. But she wanted to do research.
Well, for those of you sitting on the fence: there is nothing wrong with Swank. My dietician would like me to eat whole eggs (protein) and lite cheese (calcium). But eating red meat 3 times a week is fine – make it lean and make it count. Oh, and she understands that some of us have bodies that know they are intolerant (for me it is gluten) without the auto immune disease or allergy.
So, even if Swank doesn’t cure your MS, it can’t hurt. What are you waiting for. Think about what is more important, that piece of xxxx or staying out of a wheelchair.