The last week Dizzy and I have been thinking about relapses (and we’re not even having a relapse at the moment – quickly touching wood). But for the first time ever I find myself nearly constantly worrying about them. When will the next one hit? Will it be the same as the last one? Better? Worse? How will I manage getting through another one? The questions go round and round!
At first I thought this was all abit silly, and as all I could get out of Dizzy was something about her dinner, I couldn’t really think why it was happening. But then I realised that it’s because, for the first time in a long time (nearly 2 and a half years), I feel I am getting back on track. Well, as back on track as you can be with MS. 🙂 I’m all sorted with my new self-employed work, I am learning new things and have even collected a couple of new hobbies. I still need to sleep an awful lot of the time, and most days the MS is misbehaving a little bit (little dizzies, tingling, numbness ect), but it’s in a way I feel I can manage. And that’s ok. 🙂
But as soon I think this is all quite nice, the fear sets in. I can’t help but thinking how long it’s going to be before the next relapse hits (and being chucked back to, what feels like, square one again). And I start worrying! Relapses are just rubbish, and when you know something is very likely to happen again (as is the nature of RRMS) it is difficult to completely forget it. But it’s also means that you end up feeling you never escape them, and you’re wasting the time when you actually feel ok. It’s like carrying around a very naughty Dizzy, and never quite knowing when she’s going to decide to throw their next tantrum (Dizzy’s not looking impressed at that comparison… 🙂 ).
Dizzy’s not being much help with this at all, as she doesn’t really worry about these sorts of things. She a very much, live in the moment sort of donkey. 🙂 But what do you do to cope with the worry of the future with a chronic illness? xxx
What’s comin’ will come, an’ we’ll meet it when it does – Hagrid
I so relate to this, Heather, as I’m sure most MSers can. When I start to swirl in the anxiety of a potential relapse, or the guilt of having a good day, I remind myself how far I’ve come and that it’s been tiny steps, day by day. And that’s the only way I can live my life now because I never know what each day will bring. Focussing on things I’m grateful for takes me out of the negative mind cycle too. Hope this passes for you soon, and you can keep enjoying the success of how far you’ve come. 💕
Thank you so much Amanda for these tips. I think focusing on the things you’re grateful for is a wonderful one. I have been considering starting a gratitude diary, but have been yet to get round to it. I think I should start doing it! I think I might do a little post on people’s tips, as lots of people have said they have experienced the same thing. Do you mind if I share yours? I will of course link back to your blog. 🙂 xxx
You’re so welcome, Heather. Of course you can use it, and thanks for the link. I’ll look forward to reading it! 💕
Thank you so much! It should be up sometime next week. 🙂 Hope you have a lovely weekend. xxx
You too! 💕💕💕
There is no easy trick, in fact there is no trick at all. Dizzy has the right idea, just think like a donkey. Blogging about it makes you think about it . Maybe making new wooly animals with no MS links will absorb you! Xx
I have bought a Hogwarts cross stitch to do! I was very excited until I realised how complicated it was. I showed it to Dizzy and she just turned her head the other way. I will give it a go though, as it will definitely adsorb me. Just figuring out which colour I need will! 🙂 I’m going to do a little post next week on people’s tips, as alot of people have said they get the same thing. Is it ok if I say your wooly animal one? 🙂 I love it! I will link back to your blog. 🙂 xxx
Please use it, if you think it will be useful. Stay oblivious!
Thank you Cathy. x And I hope you have a lovely weekend. 🙂 xxx
Lovin the title 😉 great post xx
Thank you Gracie! 🙂 xxx
I think following Dizzy’s example is the best. Live in this moment, don’t worry about what might happen or when it will happen. These things we have no control over, so enjoy now by not worrying about what might be.
It’s so true. I do need to try and follow Dizzy’s example of not worrying about these things. x I’m going to do a little blog post on people’s suggestions, as alot of people have said they experience the same. Is it ok if I include yours? I will of course link back to your blog. 🙂 xxx
Of course you may
Thank you. 🙂 xxx
Hi Heather and Dizzy Girl—
I try to use my WISE MIND (fact checking with an understanding of my emotions) to process!! Then I busy myself (painting, reading, writing, volunteering, teaching, my dogs, my family or a friend, etc….).
I can’t control what’s coming but I can enjoy today!!!!
Aww, I love this Jennifer. I’m going to do a little post on everyone’s amazing suggestions. Is it ok if I include yours? I will credit you and link back to your blog. 🙂 xxx
I’m with Diz.
My MS is progressive, so my “flares” aren’t like yours, but I don’t spend a lot of time worrying about them because it isn’t anything I can control. Don’t get me wrong, I do think about it from time to time, and wonder what my reality will be in (take your pick) 2 years, 5 years, or 10 years, but what is the point of obsessing over it? I’ll cross that bridge when it presents itself.
It’s true. There’s no point, and it won’t make any different worrying about it. I do keep reminding myself of that. 🙂 How are you doing at the moment Steve? 🙂 xxx
Just fine thanks. I keep on keeping on
My husband says I do that ” you kip on kipping on” he’s from Somerset where it’s a common saying 😂😂
Hehe, I have never head of that saying before, but I love it! I think I might start saying it. 🙂 xxx
Hubby is from Somerset and it is a saying of the area
I find this the only way to live
Good post, and I used to worry about when my next relapse would be, and then worry about worrying may bring on a relapse! I’m a take one day at a time kind of girl now! It’s not easy, but for me personally it works. Wishing you and Dizzy a lovely week.😊x
I think taking one day at a time is a wonderful approach. And I so understand about the worrying, and then worrying that that worry will cause a relapse, which makes me worry more! It ends up getting ridiculous, but it’s so hard to stop when you’re in that cycle. x How did you manage to go from worrying to taking things one day at a time? xxx
Very true we all know about stress and MS. Worrying will just make your life seem longer and more misersble
I am happy you are feeling more like yourself these days Heather – that’s a good thing and you can take advantage of your beautiful weather and get out a little. I’m sorry you must have that niggling fear in the back of your mind about a relapse. I hope any relapses are behind you and just clear sailing ahead … enjoy each day as best you can okay? {{{ hugs }}}
Thank you so much Linda. And the weather has been amazing, almost summery! 🙂 x I hope the weather is improving for you too. Have you been able to see Parker this week? 🙂 xxx
That sounds so delightful Heather – I had not walked since last Saturday due to the big wind event, and its aftermath, and snow and slick spots the rest of the week. I finally got down there today and saw Parker and the gang. It was cold, but the sun was out and it made all the difference in the world. I hope our warm and summery weather remembers to show up eventually. 🙂 {{{ }}}
Aww, I’m glad you got down there to see him. 🙂 Having the sun out makes such a difference. And I’m hoping it does there soon too. Our warm weather seems to have drifted off again, and we now have a storm instead… xxx
Sorry to hear your warm weather has disappeared again – it was nice to remind you about Spring and Summer – a little taste of what’s to come. I am worried all this oddball weather will spawn volatile weather in the heat of Summer, when it is so hot and humid out.
I hope not. Let’s just hope for a nice, calm, warm summer. 🙂 I’m sure Parker will be happy to move into some nice warm weather too. 🙂 Is he still looking rather chubby when you last saw him? xxx
I hope so too Heather – I worry about the volatile Summer weather and just hearing about those bad tornadoes in the South yesterday gives me some angst. So many deaths. In a few seconds, lives and houses were snuffed out by that tornado. I think Parker and his pals will be happy to dig up all the peanuts they buried once warmer weather arrives – right now they still can’t as we have a real bitter cold spell and it will take a while for the ground to thaw out He seemed just as chubby on Saturday morning when I saw him. That’s good for the lean days.
I am glad Parker is still as chubby as ever! All his chubbiness will be keeping him nice and warm too. 🙂 xxx
And I went to the grocery store today (finally) and got lots of peanuts so I can feed him and his pals and the porch pals … I was starting to get low again. It is just two weeks til Spring, but we are in this cold snap and it feels more like mid-Winter!
It’s not too cold here, but the wind has been awful. I’ve had to ban Dizzy from going out, otherwise she would have got blown away!! Did you get to see Parker at the weekend. 🙂 xxx
I did see Parker and his friends Heather and I got some pictures. It was a beautiful sunny day for a change. Parker and his friends are heavier than Dizzy, so the heavy winds that we’ve also had here will not blow them away like a tumbleweed. The winds were ferocious yesterday. {{{ }}}
I can understand this. After I had cancer I had 10 years of CT scans and colonoscopy exams. Every time I went in wondering if they would find something. The first five years were the worst and then I began to get better at not worrying about it. I am glad to hear you are settling into an MS routine. If you do have a relapse you will deal with it. You already have!
I would have found that very scary too, having 10 years of exams. x I think I need to try and live in the moment a little more like Dizzy. 🙂 x I am finding horse riding is amazing for distracting the mind too. 🙂 xxx
I find just being around horses therapeutic. Apparently horses heart’s have an electromagnetic field around them that includes humans who are near them and it has been proven that it can help to slow or calm our human heart rates. I’ve read a couple of articles about it. And riding requires our full concentration so that is also good for getting our minds off the hamster wheel of worry.
I never knew that about horses and their heart’s. That’s amazing, but makes complete sense. It’s the full concentration that I’ve found is amazing. There’s no space to be worrying about anything else. 🙂 xxx
I find that anything that will distract your mind is a brilliant way of coping with this disease. Make time to do lots more of what you enjoy doing and don’t give yourself a hard time on days when you can’t do anything.
On really bad days I try to distract my brain somehow, otherwise I sit and start to feel sorry for myself. This then makes me feel like everyone/everything is against me, making me feel even worse.
We have to learn to manage our illnesses, so we can live as good s life as possible
Great post Heather and I think that this is one of the hardest things with MS, the never knowing. I don’t really have any answers, apart from just taking it day by day. This is where time to myself (doing breathing through yoga etc) seems to help me the most, it just seems to quieten my mind. So glad that things are feeling settled for you, long may this continue! xx
I think it would be easier if someone gave us a little planner, so we knew. 🙂 It’s the not knowing and unpredictability of it that can drive you abit nutty. :/ I have been slacking abit on my yoga and breathing, but I have always found they helped before. Thank you for the reminder. x I’m going to do a little post of people’s suggestions, as a few people have said they get the same thing. Is it ok if I include yours? 🙂 I will link back to your blog too. 🙂 xxx
Of course! Xx
I am so glad life and work are going well for you Heather. It makes me very happy. I find EFT Emotional freedom Technique also known as tapping very good for fears. You can get a lot of tips online that are all free.
Thank you Brigid. I have never heard of that before. Is it something you are able to do yourself? xxx
Yes. You can learn it yourself or go for a session with a therapist. It is very powerful. The website is http://www.emofree.com
Thank you Brigid. I’m just about to check it out now. 🙂 x I hope you are ok, and have managed to have a restful weekend. Sending hugs. xxx
Still feeling tired Heather bit will rest more this week x
“…we’ll meet when it does.” Indeed, it will come. Not if. You are getting a handle on your new life, and that is a huge improvement. I try to expect the best and prepare for the worst. Nice post!
Thank you! And I think expecting the best, but preparing for the worst is a great way to approach things. I’m going to do a little post on people’s suggestions. Is it ok if I include this? I will of course credit you and link back to your blog. 🙂 xxx
Yes, I’d be pleased! Thanks.
Always have a plan “B” in place just in case you have an attack. Glad to here your MS is behaving! Must be a nice relief.
How is your violin playing coming? Got a favorite song to play yet? Dizzy needs to be serenaded occasionally for helping you get through this MS life!
I am now on the second finger! It’s still proving to be very difficult but I’m not giving up! 🙂 Dizzy is waiting for me to be able to play a slightly more complicated song than I can at the moment. 🙂 And we haven’t yet come across one about donkeys… 🙂 x How are you doing? xxx
I worry about whether I’ll be able to do things I need to do, whether I’ll have to break plans (despite any ‘plans’ I have being not very important) and it worries me too, how I’m going to be and how bad things may get. I think that trying to be prepared in any way you can helps (knowing how you’ll deal with it, having the tools to manage it, being roughly on top of things) and reminding yourself that you’ve been through tough times before; whatever happens, you’ll cope with the next relapse, you’re stronger because of all the ones you’ve been through before. Then, it’s a case of trying to quieten those thoughts a little otherwise they dominate your brain and limited energy and make you worried about life and the future. A very thought-provoking post, Heather!
Caz xx
Breaking plans always worries me, even the little plans! And I love your suggestions, especially with trying to be prepared just incase. Thank you Caz. x I’m going to do a little post on people’s suggestions. Is it ok if I include yours? 🙂 I will link back to your blog. 🙂 xxx
Not sure my comment is really helpful (or makes much sense, my brain’s been rather foggy) but sure! 🙂
I love the idea of collecting ideas and thoughts from others to make a collation of suggestions.xx
It made sense to me! 🙂 And I just thought it would be nice to do, for me to do, but also because quite a few people have said that they experience the same thing. xx How are you now? xxx
I’m a little better, thank you. It’s very slow going, but I’m certainly better than I was in the hospital & I’m hugely glad to be home! How are you keeping this week? I hope you’re managing enough time to rest & that you’re doing okay ♥
Caz x
Being home is so much nicer than being stuck in hospital. Just look after yourself, and take one day at a time. 🙂 My weeks going well, we’re come away for a couple of days to the sea. Abit chilly, but it’s still nice. 🙂 x Sending hugs. 🙂 xxx
Dizzy has the right idea by living in the moment. None of us know what our futures bring so thinking too much about things that we cannot control only put us in an iffy mindset. Do what you can… when you can. Enjoy your days as best as you can. Read, write, share and overwhelm yourself with the things that put you in a positive frame of mind because that positivity brings happiness and less stress which in turn helps with less side affects. I pray that you and Dizzy have a wonderful weekend!! 🙏🤗
Thank you so much Christy! I love your suggestions. Dizzy and I are going to do a little post on people’s suggestions, is it ok if we include yours? 🙂 We will credit you and link back to your blog. 🙂 xxx
Sure. Thank you so much! God bless you both and your family!
Worrying brings on stress and stress is what makes us sick. Live one day at a time and trust in the strength of the Lord. I will bear you up I my prayers. Have a great week.
Aww, thank you so much Beverley, and you are so right about the impact of stress. I hope you are having a lovely week. 🙂 xxx
Oh yes! Thank you and same to you.
I am so sorry you are dealing with such heavy emotions. Although I don’t have MS, I do know what it is like to not know what each day will bring and how long each symptom with last or if it will ever go away. It is scary……..but like you stated, wasting your time on what may be only steals that day’s joy. Bless you for sharing your heart.
Thank you Wendi. It has made me realise how many other people have the same thoughts and feelings (whether they have MS or not). You start to wonder if it’s just you sometimes! xx Hope you’re having a lovely week Wendi. 🙂 xxx
I completely understand……..it is very scary! Thank you for always being so open!
Nice blog
Thank you. 🙂 xx