Jenny Hi everyone! Hoping that you are all as well as can be and are enjoying these longer days (and the chance to curl up with a hot chocolate!) like I am. Blogging has been a bit slow due to my relatively recent (August) return to work. My body is most definitely telling me that I can’t easily do it; but I am a bit torn because, as exhausted as it makes me, I love the families that I work with and like feeling like I am making a difference. Hey ho, I guess that is why people describe the experience of having to leave work due to illness as one of the hardest to go through. Watch this space is all I can say at this stage.
I knew that I wanted to blog tonight, but I just wasn’t sure what to blog about. I have had loads going on: I had my assessment for Personal Independence Payment (PIP) a couple of days ago, it’s been Halloween, we’re making ongoing decisions about our new kitchen and our little boy attended a swim meet a couple of hours from home. The PIP assessment really took it out of me – the anticipation of it, more than the assessment itself, I hasten to add. I plan on filling you all in on it once a decision has been reached by the Department of Work and Pensions. For those of you unfamiliar with PIP, it is a benefit to help with the cost of living with long term illness or disability. I worry about finances a lot – and the thought of having this to help when I have to reduce my work load would really help. Having a chronic illness is expensive.
Anyway, I was flicking through my photos on Facebook, as you do, and I was suddenly caught up in a huge whirlwind of emotion. I saw pictures of my kids when they were tiny, of long ago holidays and of people I haven’t seen in ages. And then there was me. There I was, looking young and energetic – dancing with my friends on a night out, hugging my boyfriend (now husband) on a hill in Bath, being bridesmaid at my sister’s wedding, concert-going and sledging. Loads of photos! And I looked so healthy. So energetic. I remember feeling so healthy and energetic – I always exercised regularly, slept well and just generally felt, well, good. Looking back over those photos today, I felt jealous. Jealous of the person in those pictures and frustrated that I am not her any longer.
I know that I have so, so much to be grateful for: my husband, my kids, my family, my home and friends. I need to get back to appreciating the little things in life, the lovely autumn we’ve entered into, the fact that my kids are (amazingly) getting on quite well at the moment. But that ache, to just go back to the old me, for one day, is so strong. I don’t know how to get over it… maybe I never will. I know that thinking this way doesn’t help, so I am keeping this a short one, but I just thought that I would share as I want anyone else feeling this way to know that it is normal. Big hugs.
Welcome to the worst part of MS, Jen. It’s not the end of the good days though. I’ve lived with MS since I was 11, and I’m very close to the 3/4 century mark, something I think is very rare. Part of the time I’m aiming for the century mark, but then life gets real again and I really don’t want to live that long. Or do I? Life for me has been an adventure that is at times so wild even I wonder how it happened. I wouldn’t miss it for the world, but truthfully, I would love to turn the clock back about 60 years just to re-live some of my younger, dumber days. I’m one of the people who had to retire long before I was ready, even though I had actually reached the age when retirement was expected. Just too stubborn to give up and give in, I guess. But, I started losing my balance and falling, and being in health care, just kept worrying that I would be trying to help someone one day and fall, taking them down with me. So, here I am, 12 years into forced retirement, still falling on my head, getting back up and finding the fun in the trip down. And realizing each time the truth in what my youngest always says, that as long as I just hit my head it will be okay, because that is the hardest part of my body. Take care of yourself Jen. You are gonna make it for a long time yet.
Thank you so so much Angie, what a fantastic reply 🙂 You sound so positive and full of energy, I need to be more like you! I definitely have my positive days (most days in fact), I just need to focus more on them I guess. And realise that, even if I fall, I WILL get up again. Thank you x
Way to go girl! I still have my days when I wonder if anything will ever go right again, but at least I know this too shall pass. On the strong days I sure make up for the bad ones by overdoing everything, but I live in a building filled with old people who gave up at a certain age and just sit and vegetate. Makes me shudder just thinking about it. Or it could have been that cold wind that just hit the window behind me. I shuddered over something, anyway, We all need those off days though. Forced quiet gives time to rest whether we need it or not — usually we do though. Not sure if I’ll ever open my blog back up, but will try to keep in touch with you if you don’t mind. And the day might come when this Kentucky Angel decided to fly again. Take care of yourself. You are the only one who knows how you feel on any given time, so you alone know when to rest and when to be active. Ya know, that’s the worst part about MS — we all look so normal, whatever that is, and people who are not wearing our shoes just can’t understand the meaning of “fatigue”. Just doesn’t seem fair at times.
Absolutely – I use crutches but otherwise look ‘normal’ (or so I think, haha) so people can’t see what goes on under the surface. Of course I don’t mind keeping in touch! You sound like a really knowledgable and positive lady, exactly who I want to be. Take care ❤️
Yes, there it is. I miss “me”. There’s still lots of good.
Yes, so important to try and focus on the good x
Oh yes, yes, yes. I miss me also. I do feel that someone died and it was me. Now here I am in this body I don’t recognize, struggling, tripping, and trying to be grateful. Three healthy kids and a husband…but missing the old ME. Thanks for your words.
Thank you Stephanie, it helps to hear that I’m not alone. We’ve got this! I need to try and focus on all the great stuff more sometimes I think x
A great post Jen, I understand what you mean I sometimes think my outside light has gone out but my inner light still shines brightly, keep smiling 🌹
Thank you Elaine! X
The past is past and that’s where it should stay. Yes look back at memories but don’t keep thinking of what life was then. Life constantly evolves, you no longer have to crawl around, use a potty etc. Concentrate on what you can do and have now, live for this moment, that’s what will become your memories.
We are not meant to live looking backwards, our eyes face forward for a reason.
Absolutely! Thank you – it helps to be reminded 🙂
We have to accept that life changes. So face the new changes knowing that you will get even more wonderful memories.
Jen I truly love reading your posts! You have such a strength and determination in you anyone that reads what you write can feel it! You are an amazing woman that I just wish more could be like!!! Take care my dear!!!
Thank you so much Alyssa! That is such a lovely thing to say 🙂 xxx
You are welcome Jen! You truly are a great woman!
❤️😊
Big hugs Jen, I totally know how you feel. Sometimes we need to remember to live in the moment and let go of the past.
Absolutely, I don’t know why I put myself through looking at photos. Need to get back to some meditation I think, to try and ‘live in the now’ x
Not just sometimes, we have to learn to live in the moment, always
Aww, I so know how you feel. Only yesterday my husband was sorting through some clothes and I came across all my old gym stuff. It really touched a nerve remembering the days when I’d be able to exercise a few times a week and feel so fit and healthy. Was that really me?! Meh! I know everyone says to live in the present but I think it’s only natural to look back on how life used to be – and I think it’s ok to feel emotional about it (I went to counselling the other day which is why I (sort of!) sound like I know what I’m talking about!!!). After all it is still “us” just in a different phase of our lives. I hope it helps a little me saying I know exactly how you feel and I feel the same. It doesn’t mean we dwell on it but sometimes we just feel a little sad – and that’s ok! Sounds like you’ve had a busy time and I wish you all the very best with the PIP results. I can imagine how stressful it all was. Keep your chin up Jen – always love reading your blogs 😊xx
Thank you so much Emma – it DEFINITELY helps to know that others are the same, even though I wish it weren’t the case for any of us! I think you’re right, and my busy time seems to have impacted a lot on everything. I think that I definitely need to look into counselling too. Have a lovely very Sunday xxx
I get this feeling too. It’s when facebook comes up with memories from 4 or 5 years ago and it’s like seeing me in a whole different life! Some days it’s ok but other days I can hate facebook a little bit for it. :/ Hope your weekend is going ok. 🙂 xxx
Thanks Heather, trying to get the house organised this weekend, which always makes me feel better (sad, I know haha). Hope you have a lovely Sunday xxx
Reblogged this on Dream Big, Dream Often.
Thanks Danny 🙂
You are welcome!