It’s World Mental Health Day today so me and Dizzy thought we would do a little post on what living with anxiety caused by chronic illness is like for us.
It’s not something we usually talk about to people but living with a condition like MS can have a huge mental impact on you (it definitely does for me). We’ve always been abit anxious about things but it was only last Autumn when my MS diagnosis really hit (2 years after my diagnosis…) that it got abit out of control! Fortunately we’re doing much better with our anxiety now but it still has an impact on our day to day life.
- Worrying about everything! And I do literally mean everything. From the big stuff like how my MS is progressing, to the little stuff like I think I left my pen at work…
2. Catastrophizing situations. This is especially true with anything to do with health. One slight ache or bump and I’m convinced I’m dying.
3. Feeling tense which causes back and neck pain.
4. Nearly impossible to turn off and fully relax. This also means it’s difficult to get to sleep or I wake up and then can’t get back to sleep! I use to be able to sleep for 8 hours straight.
5. Difficulty concentrating.
6. Dread having to go out by myself. I get really worried about my MS flaring up when I’m out and about. I’ve only needed help a couple of times but these times have stuck in my head!
7. Palpitations. This for me was being able to hear and feel the blood pounding round my head. Luckily this one is now much less frequent and not nearly as intense. 🙂
8. Feeling sick. I’m over worrying and it then puts me off my food! (and normally I love my food!)
9. Shortness of breathe/difficulty breathing.
This was me trying to get Dizzy to do something that would represent difficulty breathing. I think she just thought she was looking for food in the bag… 🙂
10. Feeling over emotional.
So that’s our 10 things! Luckily all of these things are much better than how they were at the beginning of the year for us, but it has really made us aware of the mental impact of living with chronic illness.
Has your physical health ever had an impact on your mental health? Did you find things that helped you and what were they? xxx
Thank you for sharing this list. I’ve “liked” it because it’s really brave of you to share this with us all, but I don’t like that you have to go through all this. The thing that has helped me probably sounds obvious – talking. Just talking to people about it, realising it isn’t stupid and being able to just unload some of it. That and the occasional bloody good cry to clear the system.
Thank you! It does feel like a scary post to have done but at the same time I think it’s important. And I am in a much better place than I was which makes it easier. 🙂 Talking is definitely top of my list aswell! Having people I can talk too and who didn’t think I was going mad (or at least didn’t say so :)) has been the thing that’s helped the most. xxx
Thank you for being vulnerable and sharing what anxiety is like for you with chronic health issues. I think there’s a misconception attached to us where people assume since we do not have something like cancer, we don’t really have anything to be anxious about. And no, we might not be dying right this very minute but there’s still so much that we have to stress about – will it get worse? Will I be able to function tomorrow? And if today is that day of being totally debilitated, how will I make it through to tomorrow? If I do ____ how long will it take me to recover? Will I miss something important? Did I remember my pills today? I mean, the list goes on. It affects every aspect of our life. I really appreciate people like you who speak out against that in a way people can understand.
Thank you Lauren for your comment. 🙂 I agree completely with everything you say and the reasons to be anxious. I think what really got to me after the relapse last year was the foreverness of chronic illness and the unpredictability of it. I don’t think people realise just how much it impacts everyday. Mental health does seem to be apart of chronic illness that doesn’t get discussed much. xxx
Thank you so much for sharing! I definitely have trouble turning my mind off! And especially at night. I also get very overwhelmed at times. And when that happens I know I need to regroup. Jigsaw puzzles and other puzzles really help. Even though I’m using my brain, I have refocused it to one task rather than many. Are used to love to worry. I thought I was helping God figure out what a solution might be. Pretty presumptuous, huh? I wouldn’t say that I am completely over worry, but having a chronic disease has made me realize that life is one day at a time!
I love puzzles for that reason! It keeps your mind busy but in a relaxing way. 🙂 Realizing to take life one day at a time is the best way to be I think. 🙂 I’m still learning to be able to do that but I think I will get there. 🙂 Also think I need to start doing more puzzles again. xxx
And I think that’s all you need, an awareness to take one day at a time. And give yourself a break when you haven’t achieved it!
🙂 xxx
I think I must have some form of anxiety too because I experience nearly all of these………..I feel so bad for you. I know how it is to have a chronic illness (it makes it that much more difficult), my heart goes out to you!
DakotasDen
I’m sorry you experience most of the things on my list too. 🙁 I think it can sometimes be hard to put a name to things we feel and experience when it comes to mental health. And thank you. 🙂 I am doing much better now though. I still experience all of these things but no where near to the level they were. 🙂 Hope you’re ok. xxx
Thank you for sharing and for opening up to us and being brave. I read through your list and I knew there would be a bunch of comments that could relate with this, mine being one of them. Yes, Anxiety, Depression & PTSD – been there, done that and bought the bloody T-Shirt!!! My anxiety then lead to a death anxiety too which is common and you talk about that in your list of ten.
I tell people that having a mental health issue and recovering is like being an alcoholic or a drug addict you can always fall off the wagon; every day I have to be positive. I wake up, do my yoga or meditation and then look in the mirror and talk to myself. It works for me. Some days I don’t want to but I do what needs to be done and it has been three years of intense work and I’m still fighting and getting on with it. Physical pain is there too, I’ve had my share of that and that only heightens all the others.
I understand you not wanting to go out and being embarrassed, but you know what I realised that people who would poke fun at me or look at me because I was having a flare up or a “moment” are probably the same small-minded people that laugh at disabled kids or watch a blind person struggle. You can’t control other people, but don’t ever let them control you!
From what I have read on your blogs you are wonderful and now I know you are brave.
What an awesome combination mate!! If you are ever in Australia, let me know.
Smile
Mel x
I’m sorry you’ve had to go through them all. The death anxiety was just awful. You try to be rational about it in your mind but the irrational thoughts just take over until you completely believe them! I think I’ve always had it a little bit too but anything I worried about to do with health before turned out to be nothing so I always told myself that. But with the MS diagnosis that wasn’t working anymore!
I really love your little morning routine with yoga, meditation and then having a little talk to yourself. I really think that’s the sort of routine I need to start having aswell. Do you tell yourself positive things? 🙂
And thank you so much for your lovely comments. No plans to visit Australia at the moment but I would love one day to visit, and New Zealand too. 🙂 xxx
I’m glad to hear your anxiety is better than it was earlier this year. so challenging especially with chronic illness. For me it can become this catch 22: anxiety keeps me awake, which lack of sleep exacerbates chronic illness, which then pain keeps me awake, and round we go. I found therapy helped a lot, as does having a ‘back up’ in that I have sleeping meds I know I can take but can only take a set number of times. For whatever reason knowing I have them available makes a huge difference, and I end up not needing them. My other is to make sure I have nothing I absolutely have to do before 12noon whenever possible. If my mornings are flexible my anxiety stays well managed, if my mornings have ‘must do’ things like appointments I’ll be awake most of the night worrying I’ll not get up in time. I also use my calendar and keep a fairly routine schedule, the calendar helps relieve anxiety that I’ll forget something and relieves the need to keep a running mental to do list, and the routine schedule means my life is usually fairly predictable. I also use exercise a lot. I find for my mental health a good outdoor walk at least 4x a week is required. Now a days most people who meet me wouldn’t consider me an anxious person, they’d be wrong lol. I’m just an incredibly well managed anxious person LOL
I can definitely relate to that with sleep and also then the pressure of feeling you have to get to sleep otherwise you’ll feel worse, so then you can’t sleep. I too have sleeping tablets. Got too a point where the MS was getting really bad because I couldn’t sleep. I haven’t taken any in ages but it does help me knowing I have them in the draw. 🙂
I’m really glad you’ve found ways to manage yours. I think being a well managed anxious person sounds a really positive place to be! 🙂 xxx
Being a well managed anxious person is definitely easier than when I was unmanaged that’s for sure. A wide variety of coping strategies are great to have in the tool box! Sounds like you have a variety in your tool box too 🙂
I’m definitely going to add some of yours to my anxiety coping tool box too. 🙂 xxx
What an honest list. I felt all of these things in the first few years after diagnosis, but the good news is that as my medication has stopped relapses, I am slowly learning to trust my body again and the anxiety is ebbing away. I hope it will be the same for you soon.
I’m so glad you’re anxiety is ebbing away. That was what really set mine off. The sudden feeling of not being able to trust my own body and then if I had any twinge or anything I’d go into a panic thinking ‘what are you doing now?!’ Thankfully mine is getting easier now. 🙂 Even with the relapse in the Summer, it didn’t have anywhere near the mental impact the one last year did so I’m hoping that’s a sign I’m coming to terms with it now. 🙂 xxx
Forgive me for not bringing anything magical to the pot but … here are a couple of things which I find help me:
The neck and shoulders pain problems …
We all forget our posture and kind of slump. But I’ve found a little trick which works for me when I suddenly realise that my grumpiness is being caused by the acute pain in the neck and shoulders.
I imagine my head is a balloon, floating free. My task as the owner of the balloon, is to bring the ears on the balloon into line with the shoulders.
I have no idea why or how it works, but as soon as I get my ears in line with my shoulders, the pain begins to subside. But it’s a continual thing. Within minutes sometimes I can forget and slump again … so you have to do it over and over sometimes.
The Sleep problems…
Getting to sleep is my biggest problem – because night time and bed time is the place where, for some reason, all the worries will crowd in and I begin to toss them around, and they grow.
So … I shopped around to find a sound machine which had great noises. Try them out if you can – as Rain on one sound machine might be lovely. But Rain on another machine could have an annoying drip, drip, drip – which can get on your nerves after a time.
You might even find a baby/childrens bedtime ‘thing’ could be the thing for you. My grandson was ‘helping’ go through the boxes of older toys which we had stored away under his bed, when he came across a little glowing Seahorse which we bought for him as a baby, because the pretty, gentle music on it lulled him off to sleep.
He came running in with this toy which he’d found at the weekend, and made me ‘snuggle’ it as if I was going to go to sleep with it. I could seriously have fallen asleep with it! I found it so comfortable and so gentle!
So if you do go for a noise machine … just have a peep at the baby things – just in case they do it for you.
Have a blessed day ~ Cobs. x
Thank you so much Cobs for these suggestions.
I would never have thought of that for helping with the neck pain, I’ll give it a try.
I will try the music aswell. Even though I now want a little glowing seahorse, it sounds adorable and so calming! 🙂 xxx
I never knew anxiety or at least never had anxiety attacks until two years ago when something negative happened with a few of my extended family members. Often it’s an overwhelming, panicky feeling that definitely affects my breathing. Thankfully, I’m learning techniques to help. I too worry over everything! I’m trying to break that habit, but it’s so ingrained in me. Thanks for this post. I love all your posts! 🙌🏻
Awww, thank you so much Camie. We’re really glad you like our posts. 🙂
I’m glad you’re finding techniques that help. Anxiety attacks can be really scary. What ones have you found that help the most so far? It is so difficult to get out of the habit of worrying about everything. That’s one I haven’t had much success yet in controlling. xxx
Excellent post. I think you have identified things that many people feel even if they are not living with chronic illness. I suffered from depression when I was in my twenties and can remember several of the things you are talking about. Even now I have to be careful to not let my mind go down the path of worry when I wake up at 4am.
I am realising that too. Mental health is such a big issue now and seems to affect so many people.
The nights do always seem to be the worse! I only have to be awake for a minute or two and my minds off again! Did you find techniques that helped you? xxx
I find that rebooking the “worry” until a later time works I say to myself ” I will worry about this at 11:15 am and not now at 4:00am. That helps and also conscious physical relaxation ( working from head and neck down through the body).
I really like that idea of saying we’ll worry about it later. At night everything always seems worse aswell so it’s the worst time to sit and think about things. I have spent all night worrying and then I get up and realise it’s really not that important! I think I’ll start trying this. 🙂 xxx
I love dizzy’s idea! I think I am going to start taking classes from dizzy! Maybe I could learn from Dizzy how to get my anxiety in some kind of healthy way!! Thank you for posting this!!
Aww, thank you Alyssa. I’ve definitely found talking helps and just being kinder to myself. Accepting that it’s ok to not be alright about everything all the time. Hope your pain is abit easier for you this week. Any sign of the MRI results yet? xxx
Thank you! Yes, I did hear about the MRI. My husband and I went yesterday to meet with the doctor, so she could go into detail about it. It was BAD! She showed it to us and told us what we were looking at, but failed to be able to really answer questions. I need a new doctor because she does not seem to be all that great. Anyways, there are a lot new and active lesions on the brain and one large one on the spine. She is starting me on steroids and explained that the Tecfidera is not strong enough. I am going back on Gilenya as soon as they can get me into do the first dose. She said that it was one of the worse MRIs she has seen but she also claimed to have 1000’s of patients which was is SO impossible! It was a terrible appointment!! I did not have the energy to blog about it yesterday, hopefully today though. I hope you are doing well!
Is she a neurologist or a general doctor? I’m so sorry the appointment went so badly though. That’s a ridiculous thing to say about your results, hows that suppose to help in anyway. Silly woman. I’m glad you’ve got an action plan in place though. Make sure you rest and look after yourself. At least now you know whats going on but try not to dwell too much on the results. Nothing can tell us what will happen next and you might not have any new lesions for ages now. Sending hugs. xxx
The doctor is a neurologist, just not a very good one! Thank you so much for your kind words. I am going to do my best to rest as much as I can. I hope you are doing well!! Hugs!!
Thank you for sharing your vulnerabilities Heather and Dizzy. This is such a thought provoking post. I am so glad your anxiety is improving. It is such a horrible thing that so many if us do not realise lurks underneath. I find so many things useful but recognising it is there is the first step. If I get my sleep it seems to be the key for me. It takes a multi pribged approach to get it right. Little caffeine. Not watching tv. Not checking my phone late in the evening. Going to bed at a regular time…. Hugs to you both. X
How is your job going? Are you feeling any better ? X
Thank you. Me too. I’d never experienced anything like it till this year but looking back all the tendencies were already there. It was just the relapse that massively set them all off!
Sleeps a key one for me too! I’ve never been good without my sleep and I definitely feel more positive on days where I have slept well. 🙂
It’s going abit better thanls. I’m still not that sure about it but it’s better than it was! 🙂 And I’m definitely feeling much better. Struggling with fatigue but most of the other symptoms have settled down. 🙂 How are you at the moment? xxx
Thats good Heather. I hope tge fatigue lessens for you. I am doing good really. One down day at the begonnibg of the week but I went out to my class at our womens group where they had a gel nails night. I came home with purple gel nails! That did the trick. 😉
I think purple gel nails would brighten anyones day! They sound amazing! 🙂 xxx
One of the particularly troublesome aspects of MS is that so many of the symptoms can be cognitive or emotional. Are the emotional breaks because you’re worried and stressed, or a symptom of a relapse. When I cry at shampoo adverts (her hair is so beautiful, why isn’t mine like that?) or similar excessive responses, I know I need a rest and shouldn’t make decisions for a while!
Thank you xx
Thank you for taking the time to read our post and for commenting. 🙂 I definitely find being sleepy and needing to rest has a big impact on me emotionally. I do need my sleep. 🙂 There hasn’t been any crying at shampoo adverts yet but I do often think the same about the hair! Theirs always look so beautiful!! xxx
Thank you for writing this. I’d imagine many people living with chronic illness also suffer with anxiety. I think it’s very hard to avoid sometimes, as it impacts on our lives so much. I know I worry far too much about stuff, over think things and most definitely get over emotional! Thank you for being brave enough to share this xxx
I worry way to much too and over think everything! But I completely agree with you. When you think about it I think it would be nearly impossible for chronic illness to not have some mental impact at some point. Thank you for your lovely comment again. 🙂 xxx
Thank you for sharing, several of the things on the list are true for me as well, and sometimes I find I manage ok with them, and other times I have a bit of a meltdown 🙁
I find gentle yoga, doodling, crosswords, audiobooks, meditation and getting outside all helpful, but of course there are times when my MS makes some/all of these difficult, when physical and cognitive symptoms are bad. Hope you’ve had a good week, and thanks again for sharing. I find your blog inspiring 🙂 x
I’m the same. Some days I feel in control and others I feel completely meltdowny. I like all those things too! I’m terrible at crosswords though, much better at the sudukos. Hope you have a good week too! 🙂 And thank you for your lovely comments. xxx
Thank you for sharing our post. 🙂 xxx
! 🙂 And I’m definitely feel much better.
I’m really glad you’re feeling much better. 🙂 xxx
I can definately relate to this. I have a lot of this stuff sadly. I hope you’re doing ok. I just wrote a post with a cartoon you might relate to. Take a look if you like, it’s http://www.luthienthegreen.wordpress.com thanks for the post!
Thank you for taking the time to read and comment on our little post. 🙂 Am heading over to see your cartoons now. 🙂 xxx
Your welcome, I really enjoyed it 😊
I have followed you 😊
Have followed you back. 🙂 xxx
Thanks 💕
Beautiful share! Yes, my health has effected my life greatly however, it used to be a lot worse. I don’t know if this will have an effect for you but, yoga and meditation have helped me a lot. Especially with my anxiety and pain. It’s hard sometimes to get there however, when I do, I thank myself! 💜
I find yoga is really helpful! I’m still struggling with the meditation though as I find it very hard to calm my mind during it. What type of meditation do you do? xxx
Honestly depends however!!!! And I must write it like that. Vibrational, if you have a singing bowl, does wonders to quiet my mind. It’s like it balances the crazy internal vibration
I’ve never tried using one of those before! Thank you for the tip. I shall give that a go. I think anything would help otherwise my minds just like ‘quiet time!! that means extra worrying time!!’ 🙂 xxx
I’m not joking the sound and the vibration resonates through you, I wish I could describe it further but it’s something you much experience. It’s helps a lot! Let me know what you think if you get a chance to try one. 🙂💜
I will do! I’ve been meaning to try and do meditation again so this can be a reason to actually do it now. 🙂 xxx
If I can’t quiet even that way, I force a mantra. When I can’t keep saying it in my head I write it over and over.
i dont have a physical health problem but i relate to all of these because i do suffer from really debilitating anxiety. i’ve learned to cope with it by using distraction techniques. and deep breatheing which is super hard to do. xxx
I’m sorry that you suffer with anxiety too. Distraction techniques are good. I’m not always able to get them to work but when I do they are good. I have been trying deep breathing, but as you say, it is hard to do!Would love to know if you discover any other techniques that are worth a try. 🙂 xxx
As I was reading your list I was saying to my self “Yes, I know what that is like”. I have experienced them all, and my usual way of dealing with all of these was to just try and handle it. Which I did with moderate success. What I have found out, to my amazement. That by sharing the load with someone, mindfulness (some kind of meditation) and journaling I have been able to control all of these so that they no longer have that dominant role in my life. I don’t think I will ever be without these symptoms, I will just be better prepared for them.
Thank you so much for sharing your experience, and it is the bravery of people like you sharing your own experience that makes our personal journeys, less lonely. Thank you.
I completely agree with all your ways of coping with anxiety Robert. The talking to someone is the best one I think and can make all the difference. Especially if the other person can help you to see the funny side of things. 🙂 I think the same aswell, I’ll always be like it but hopefully much better at living with it. 🙂 Hope you’re having a great week. 🙂 xxx
Thank you for sharing this I so relate. Basically I always thank the Lord I am a healthy person but I am also an anxiety attack survivor. Happened aged ago and took a year to pull myself together but I had a lot of pep talks with myself. Life went on with its usual ups and downs. Biggest change in my life was bringing my aged mom back to her homeland Latvia. There I met my soul mate and my nerves seemed to have found a home so to say. Suddenly this August he died after 20 years of togetherness. Leaving me alone and looking to having to change my life around once more and wanting to return to my homeland the U.S. Suddenly there I was once again yelling at myself to keep myself in line and so afraid that those panic attacks would rear their ugly head. Luckily it has not happened but I find myself crying more in the mornings for no apparent reason. I know I will achieve my goals but it has become so hard once more. For me it is never letting go of the hand of the Lord. The best you and many blessings and thank you once more your posts help me a lot. Hope you have a wonderful new week.
It sounds like you have done and are doing so well. I’m not surprised you find yourself crying in the mornings, I can’t imagine how hard that must be to deal with after 20 years of being together. I’m so sorry for your loss but I am glad the panic attacks have kept at bay. Thank you so much for sharing your story with us.
I hope you have a wonderful week too! 🙂 xxx
Thank you for this wonderful post! It hits so close to home <3
Sending you hugs and a wonderful day xx
alanna
Thank you so much Alanna. Sending hugs to you too and hope you’ve had a lovely day. 🙂 xxx
I can totally understand~ the minute I start feeling physically unwell my mind spirals into an anxiety loop. If you are interested, I wrote a post about natural anti-anxiety helpers b/c it’s hard to remember there’s help available when you are steeped in the anxiety~ it takes focus to do just the daily things! http://botanicalalchemyandapothecary.com/nervines-and-other-natural-help-for-stress-and-anxiety
Thank you so much for your comment and the link to your post. It’s really useful and I’m definitely going to be making a note of your suggestions. 🙂 xxx
I found this article very informative…thank you so much
I’m really glad. Thank you for visiting. 🙂 xxx