I cannot believe that it was cold dark January when I last posted.
And now it is sunny warm June. Where has the time gone?!
I didn’t intend to drop off the blogging planet with my last post. I love writing and connecting with you all. But something has held me back over the last few months from putting pen to paper, or fingers to keyboard as is more apt now-a-days. My Jounrey Thru M.E. was a real salvation and place of joy for me throughout last year. Writing my blog gave me a purpose and a focus and helped me through some very tough times. But as I was finding my feet with being so much better at the start of this year, my blog seemed too intrinsically wrapped up in being ill. It took me back to a very dark place. It made me feel uneasy and uncomfortable. Ultimately, I guess I feared that by reengaging in my old illness activities, of which blogging was such a big part, would somehow suck me back down the hole from which I was (and am) slowly but surely clambering out.
But now I’m feeling stronger and more sure of myself. And over the last few weeks I have felt a yearning to write again.
The obvious question I guess is, what have I been up to since January and how the hell am I?! I’m assuming you guys would like to know… (if not enjoy the holiday snaps!)
Answering the second question before the first, I am doing really well. Amazingly well. I have to pinch myself sometimes to remind myself that it is actually real.
What I have been able to do since January shows just how well I am doing:
- I traveled to Scotland to attend my cousin’s wedding. This was the first wedding I had been well enough to attend in nearly 3 years. I even (briefly) joined in on the Ceilidh dancing and had a little slow dance with Mr B.
- April saw me and Mr B head off to the US for a 3 week road trip from Vegas to Seattle through California. We had the most amazing time. I walked onto the plane, not a wheelchair in sight! I played a little roulette in Vegas, jumped into the air on sand dunes in the 120ºF heat of Death Valley, drove up Highway 1 in our Mustang convertible, stayed in a yurt, ate sushi watching the sunset over the Pacific ocean in Big Sur, hiked in Yosemite, walked up and down the hills and went to the baseball in San Francisco, walked through the rain forest and in ten foot snow on the Olympic Peninsula in Washington and celebrated my 30th birthday with cocktails and dinner out in Seattle. It was a magical 3 weeks. Not least, because after ten years together, Mr B asked me to marry him. Through tears of sheer joy and happiness I said yes! We’ve set the date for August 2015 and I am now knee deep in wedding planning and absolutely loving having the energy to do it!
- I flew to Philadelphia to visit my sister by myself (I know at 30 this shouldn’t be a big deal, but a year ago it was unimaginable due to my fatigue and pain levels) and we enjoyed lots of ‘normal’ sister time, shopping, eating out, cooking together to name just a few.
- A couple of weeks ago, a dear friend was in hospital in Manchester. I went up by train (2.5 hours each way) to visit her and spent all of the afternoon in the hospital. I was so pleased that I was well enough to do that.
- I’m up to swimming 30 lengths a couple of times a week and practicing yoga for a longer time even with more intense sequences.
- I cook most evenings and can easily take care of the laundry on a day to day basis. I even did some ironing last week – the first time in 3 years!! As silly as it sounds ironing is actually quite an intense physical activity requiring you to stand and use your arms at the same time.
- As lame as this is going to sound, I love that I can now drive to our local supermarket, push the trolley and walk around the store and do the weekly shop all by myself! ME/CFS, and other chronic illnesses, rob you of all aspects of your life and I have really found enjoyment in being able to do the minor, mundane things that before I was ill, I took for granted like so many others – even cleaning the bathroom (which I don’t claim to be able to do very often, and thankfully we are lucky to have a wonderful cleaner who lightens that load) and pairing up Mr B’s socks make me smile now!
- I caught a bad cold virus just before we went to the USA but recovered within a week like a ‘normal’ person. It did not wipe me out for weeks as they have done previously.
I could go on and on about what I can now do without riling the ME/CFS beast. In both big and small ways I am improving day by day.
Although I am very much still on my journey thru ME and I am not completely recovered (nor realistically may I never be), the illness has a far, far, weaker grip on me and my life.
- I still have limits but I can do SO much more than a year ago before I reach them. And when I do hit the wall, I listen to my body and stop. I take a nice warm bath, do a long relaxing yoga nidra and get a good night’s sleep. Then I’m just about back to my new normal the next day.
- I do get some post exertion malaise but it’s just fatigue and not usually joined by spikes of crippling myalgia pain as it used to be. Sometimes the fatigue is a vague foggy sleepiness other times it’s an acute exhaustion. But I now believe/know it will pass. I’d be lying if I said that I don’t sometimes panic and fear very deeply that the ME/CFS is back and I’m about to relapse. But the severity of that fear is reducing as time passes.
- Muscular skeletal pain and aching limbs used to be with me 95% of the time. Now it’s much reduced, probably to as little as 20% of the time. The bouts of pain are less severe and shorter in duration too, usually coming immediately after/during pushing myself (e.g. trying on wedding dresses for 2 hours – some dresses are so heavy, and therefore hard going on my body, due to the miles of fabric and netting involved!) but are relieved by a restful evening and good night’s sleep.
- Whilst my nervous system is much calmer, my stress responses are still more overly active than is healthy. Anxiety and overwhelm are in some respects worse now than before as I do things I haven’t done for a long time and put myself in unfamiliar situations. But physically being able to do these things is huge and wonderful progress and I am working on using the Lightning Process and NLP techniques to curb the emotional side effects.
- Physically I am stronger than I am cognitively. Concentration and focus is still a battleground. But my doctors tell me this is very normal. The physical capacity returns sooner and quicker than the cognitive and as we expend our energy more on physical activities our cognitive ability can suffer in the short term due to lack of available energy. But I have been writing on this post for nearly an hour and still feeling fairly awake and alert. That in itself is progress.
If you’re new to my story, then you may be wondering what has propelled me towards recovery. Back in October 2013 I did the Lightning Process course and I haven’t looked back since. The tools I learnt during that course have been the keys to unlocking my recovery. I know that sounds corny and disbelieve if you wish, but without the LP I wouldn’t be where I am now. It is not a magic cure, but it is a highly helpful, scientific and neurological, approach to the mystery that is ME/CFS. Diet also plays a HUGE role for me and eliminating certain foods over the last year, and transitioning to a meat free diet since January, have been vital in obtaining and maintaining the level of health I currently have. Yoga, meditation and relaxation have also been important.
Now I am looking to the future and wanting to grow and move forward. I plan to set up a new site that focuses on wellness and vitality in general, as opposed to my personal experience of the illness ME/CFS, as this blog has been. Striving for, and maintaining, wellness and vitality, are my mindset and focus now. My experience of ME/CFS is the spring board for this. I have learnt so much and my life is genuinely much richer from having been chronically ill. I want to honour this and put the last few years to good use. It is important to me that I don’t feel these years of being devastatingly and life haltingly ill, have been in vain. Everything happens for a reason. Every experience shapes us and prepares us for the next stage. This may sound like a lot of waffle, but coming to this way of thinking has helped me make peace with, and accept, what I’ve been through on my journey thru ME. And thus my new site will be born! Watch this space for more info. I promise to keep you posted on here and I hope many of you will follow me onto the next stage of my journey.
That is not to say that this is the end for My Journey Thru ME. Not at all. I hope to continue posting and sharing my experience of recovery, as I think that could be helpful for others. I’m also thinking about writing my story of ME/CFS in a narrative or story form and publishing sections as I go on here. I want to preserve what I’ve been through as a learning tool for myself and others. And I think a light heartened tale of all the wacky ‘cures’ I’ve tried would make for a fun read!
Before I go I just wanted to say a huge thank you for all the supportive comments and emails I have received throughout the time I have been writing this blog; and especially during the last 6 months when I’ve been MIA. It is really humbling and I am grateful to you all. And I will, I promise, gradually reply to them all.