Jenny September Link Up With A Chronic Voice
Happy September everyone! I absolutely love September – the fact that the kids are back into their usual routine of school and clubs and the fact that Autumn is just around the corner. I am so happy to be doing another link up with Sheryl Chan of A Chronic Voice, I find that the prompts really help me to take some time out and reflect on what is happening in my life at the moment. If you would like to take part in the link ups, please click here – I have really enjoyed finding other chronic illness blogs to follow as a result of the link ups 🙂
Now, on with September’s prompts:
Reconnecting and Relaxing
As much as I love having the kids at home over the summer, they are definitely more settled once school starts again – as am I! This year has been particularly stressful difficult because I have been at home all summer rather than out at work, as many of you may know (I am currently applying for my ill-health retirement due to my Multiple Sclerosis). Being at home meant that the kids’ well-being came first on the whole and mine went on the back burner. We had a busy time, spending a few days in London, going to Sorrento and visiting National Trust properties. I had a great time, but a tiring one, and I am definitely taking the opportunity to reconnect with myself now and just relax. I just finished a journalling course, which I loved and I am now trying to get back into my daily yoga, meditation and naps to help me to stay as mentally and physically well as possible. I am not feeling too guilty about my Netflix or reading binges. A little bit of self-care at the moment goes a long way too, and I have just started getting my nails done as it is something I couldn’t do when I worked for the NHS – silver linings and all that!
Confessing
That I haven’t got nearly as far with an online course that I started last year – yes, last year – as I would like to have done. When I knew that my working life as I knew it was coming to an end, I decided to start a proofreading course to keep my mind active. But I underestimated just how intensive it would be whilst I was still at work (I literally didn’t even do my first assignment) and now that I have stopped work, I find that it is still pretty intensive and my days are busy with, well, anything other than my proofreading course. But I am determined to do it. I have extended it by another year, so I really have to get on with it so it is not a waste of money. I have now submitted my first assignment but can’t seem to get the incentive to keep going. Hoping writing this will help!
Romanticising
I am also thinking a lot about my upcoming treatment, HSCT – this is a chemo based treatment that has the aim of hopefully halting any further inflammation in my brain which could lead to even more disability. I am still waiting to hear my date for this to start and I am feeling nervous. But I have also been thinking about what my life might be like after. I am perhaps romanticising it too much, but I am really hoping that it works well and that it might even help to stop the progression of my disease (they couldn’t promise me this because of the damage that has already taken place). As I have current inflammation, I am also hoping – romanticising and, yes, imagining – that some of my disability may even improve. I know that this is unlikely to happen, but we all need a little bit of hope, right?
Sharing
Something that I have always done, but I am doing even more of in the past couple of months, is sharing my love of baking and cooking with my daughter. Because of my MS, I can’t do everything with her that I would like to… but I can bake/cook, even if just a short while. I find that sharing the time doing something specific like baking gives us quality Mum and daughter time together, which is so important to me. Her baking preferences aren’t always something that I can eat (I avoid dairy and saturated fat), but she is broadening her tastes and becoming quite a skilled cook for an 8-year-old! The other day she made herself scrambled eggs for breakfast after I helped her do it only once. I am aware that life might be quite different when she is a teenager, but, for now, I am really enjoying the 1:1 time that we are having.
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Thanks again Sheryl!
Lovely post Jen. So pleased you are taking some time for you, and always thinking of you re the new treatment. It seems like you, and us, have been waiting forever for the date to come through!. Have a lovely rest of the week and weekend.x
Thanks Toni! Yes, I keep looking at the doormat waiting for the appointment letter. I guess that I am lucky it didn’t come through for last week as I have been quite poorly with a cold/flu thing. Hoping that I will soon be fighting fit and ready for the treatment to start 🙂 Hope that you are having a lovely weekend 🙂 x
Yes,glad it didn’t come through when you were full of cold. Hope its easing and you had a nice weekend. Time to get the woollies out!. :)x
As always an amazing post Jen! I am glad you are taking some well-deserved time for yourself and considering new treatments. You really are the most amazing and inspirational people I have the honor to know. You are so incredibly encouraging and I just hope you see that about yourself! Take care lovely lady!
Thank you as ever Alyssa! It is so nice of you to say, I don’t always feel strong and some days are better than others. I like to think that strength is one of the positive things that MS has given me 🙂
You are welcome! I understand completely. I do think it is often difficult to see our own strengths in life, but you my dear are absolutely 100% amazing and full of nothing but strength and determination!
I was only thinking I had not seen a post of you earlier in the night then up you come! I was so pleased when I knew you were giving up work because I knew that you would then be able to enjoy more things without being so tired.
I used to live next door to a single lady in her 30’s who had MS which was progressively getting worse. What surprised me was that her late grandmother also had the disease.I spoke to her about the stem cell treatment but she had refused it because it was not guaranteed to work and she did not want the isolation bit, this surprised me a bit because surely it’s better to have tried.
I have a good friend who had vasculitus amongst other things and she had to have chemotherapy to strip her immune system back into working properly. ( I hope I’m explaining this right) and yes she felt very ill but got through it and felt better for having it.
It’s great that the kids have gone back to school although I miss seeing my grandchildren twice a week , I’m pleased to have more time to paint. 😀
Routine is important for children and parents. I had to smile when I asked my two grandsons if they liked school, the youngest a true Aquarian subject like me said NO, I told him that I didn’t like school either but it is something we have to put up with. My eldest grandson said he liked seeing all his friends at school but wasn’t too keen on the learning bit! What will these children turn into 😏
Anyway, sorry for the long response Jen, I truly admire your strength of character although I’m sure you have wobbles now and again.
Keep blogging
Elaine x
Hi Elaine! Thank you so much for your reply and I am so sorry that it has taken me so long to respond again – I am just getting over a cold/flu bug thing that the kids passed on (one of the negatives of going back to school!), so am just catching up with blog comments now. Your grandsons sound like my kids! Neither of them seems to be that fond of school, but they do like the social aspect 😉 Luckily they both seem to be getting on ok though. Thank you also for telling me about your friend’s experience of chemo. I am assuming that I am going to feel a lot worse before I feel better, so I figure that I won’t be too disappointed if that is how it goes. I agree with you in regards to giving it a chance. I’m sure that I would regret not trying and always wonder ‘what if?’ if I didn’t give it a go.
I do feel a lot better for stopping work – you were right about that. I still seem to fill my days though, with blogging, reading, stuff around the house etc. I tried to do it AS WELL as work – no wonder I couldn’t keep going! xxx
Kids and germs eh ! Pleased to hear you are doing okay.
Thanks for sharing and joining us this month, Jen! I can only imagine what it must be like to be a parent with chronic illness, but it has to be super exhausting! It is really nice to hear how you are spending quality time with your daughter, teaching her precious skills that can be used for a lifetime, and imparting the joy of it 🙂 I wish I had the interesting and skills for that, too! I enjoyed it a lot as a child, but not so much as an adult, heh.
P.s. I noticed that you didn’t add this to the main linkup page – you might want to do that for a larger outreach! x
Thank you for the prompts Sheryl! It is super exhausting being a spoonie parent, but the kids also help me so much :). Thanks for the heads up about the link page, I have added mine and also commented on a few others’ links and made sure that I linked to your correct page. Sorry for not quite getting it right 🙂 Looking forward to next month’s prompts too xx
Wonderful post – great use of the prompts!
I think it’s great you’re able to extend that course so you can carry on with it. You’ve had a lot on so don’t fret about it taking longer than anticipated. Netflix and reading are important in self-care and I’m learning to feel less guilt with such things too. As for romanticising, I’m also keeping my fingers very much crossed for you with HSCT, you have to have hope! Enjoy the time with your daughter and have a lovely weekend Jen 🙂
Caz xx
Thank you Caz :). I’ve also been suffering this week with a fluey/cold thing so I am not making myself feel too guilty about the Netflix! I figure that the more I give in to my need for self-care the more quickly that I’ll feel better. It is a rainy day here, so I am enjoying just chilling with the fam today. Hope that you are having a good weekend 🙂 xx