Christmas day with chronic illness
Hey guys!
First of all I want to say that I hope you all had a wonderful Christmas day if you celebrate and that you are enjoying the holiday season!
My Christmas day was really nice, I honestly was very tearful Christmas eve because of missing my Grandad and wishing he was here. However, Christmas day my Dad and his girlfriend Linda bought my Nan over and we opened presents. I made everything I gave this year and I think they liked them, I did get the feeling they preferred the presents they got from Linda’s daughter Heidi because they talked about them a lot all day and never mentioned what I had made. I felt proud of myself for not letting it get me down and trigger negative thoughts though and I still feel good about that.
We went out for dinner for the first time ever this year, and we honestly loved it! There were about 12 of us there and I sat next to my Nan and we just chilled and chatted and had a lovely time. I was feeling good I had rested a lot over the days before to save up my energy so I could enjoy the day and I am so glad I did.
By the time we had eaten the food I was feeling pretty drained and kept doing the ‘zombie stare’ into space which means my brain is taking a nap and I am on autopilot, a feeling other Spoonies will know well! By the time we got home I was ready to go to bed, it wasn’t late but it was dark outside about 6pm so I went to bed and we watched TV and just chilled out.
Now it is 3 days later and I am feeling it still! I am in a lot more pain in my arms and legs and my fatigue is pretty bad so I had a lie in this morning and I feel a bit better for it. Tomorrow we are going to hit the sales, I will be in my wheelchair because I cannot walk far enough and people could knock me over so it is just easier and safer to do it in my chair.
The only really new thing is a lot of pain in my right thumb joint, it is not like fibro joint pain so I think when New Years is out of the way I will try and get in at the doctors and get it looked at. I always think new symptoms it is best to get checked it might be part of your existing illness, but just in case it isn’t I like to get the doctor to look.
I will let you all know how the sales went when I update on Sunday, hope you all have a lovely few days!
Namaste xxx
Cinema and christmas with chronic illness
Hey everybody Merry Christmas and Blessed Yule!!
YESTERDAY I GOT TO SEE ROGUE ONE!!!! (No spoilers)
It was amazing we saw it in 3D which I highly recommend because some of the scenes really pop out and you feel more a part of it. I fell in love with Jyn Erso she was badass and incredible so inspiring and I just love females taking charge and Star Wars is always good with those characters.
I will say though that there were parts I struggled with there were a few places with shots looking down from ridiculously high places. I suffer with vertigo and I have a lot of dizzy spells and problems with balance, those shots in 3D really set it off and it felt like the floor was moving under me and I had to close my eyes just so I wouldn’t start to feel nauseous. I am hoping that does not happen when I get it on DVD but yeah the downside of cinema with chronic illness!
Today is only a few days before christmas so I am trying to finish the presents I am making for everyone and just trying to rest when I can but it is so hard when people are visiting and I need to go out places. Napping is generally how I get through things, but right now that is just not really an option and to be honest I would love to try and get some energy back. Doctors etc tell me to be more active that will help but when I am more active I feel like a zombie…I am really struggling to find a way to make life something I can cope with!
I did have some good news though I was accepted to join the Chronic Illness Bloggers Network, link is in the side, it is a network where you can get paid for blogs posts and it can raise your views. I am quite excited to see where it can go and whether it will help 2017 be a time where I can feel a little bit more useful and not just a blob on a chair!
I hope you all have a wonderful holiday season
Namaste xxx
Going out when you have a chronic illness
Hi everybody!
Last night we went out you can see the evidence in the picture lol! I say that because I have my illnesses and Lee is on epilepsy medication and because of that we tend to not go out very often at night. We both find it difficult, Lee because he gets very tired in the evening and me because I get extreme back and shoulder pain in the evening so I generally get into bed early and watch TV.
However, tomorrow is my Dad’s 70th birthday so we all went out for a meal, there were about 21 of us there and it was so nice. I got to see people I have known all my life and just chat and have a yummy meal I did not have to cook yay!
The problem was it was loud, everyone was talking so it was pretty noisy and then in the next room at about 9:30 a live band started playing. I am very sensitive to noise, as are a lot of people with Fibromyalgia and if there is a lot of noise it makes our pain worse. As the night progressed I got tired from being social and the anxiety that causes and I found myself struggling to concentrate on the things people were saying.
I also found the pain n my back got very intense and I started to struggle to sit up and keep talking, it started to become obvious to people I was struggling and so we came home. As always the first to leave and I got home dying for a cup of tea and extra tablets to help me sleep and to help the pain.
Today I feel hungover and my pain feels like I was up dancing all night I am very tired but it was worth it now and again I make a point to go out and not avoid things. Going out is a rare thing but something I am glad I do not avoid it its important to force myself to be social no matter how long it takes me to recover.
Namaste xxx
Trouble hearing
Hi everybody!
So for about a month now I have had trouble hearing, this happens about twice a year for me and I put drops in for about a week then go see the nurse at my local doctors surgery and they syringe my ears. I am sure when I was a kid they should have done something to help but they didn’t so this is my life lol.
So anyway I have been trying to get an appointment for three weeks which meant I could barely hear and then the other day I had a bath and my ears popped! Then I could hear and now I can hear so long as I am upright but when I lie down nothing not a single thing can be heard!
So I finally went today and they said they cannot syringe my ears because they can see the drum so I have to keep up with the drops…I mean seriously I get why but it doesn’t mean I have to like it!! Now I have to be all headachy and off balance while I wait for the drops to work on the rest!!! Gah!
Other than that it was the last lesson of Yoga this week until January and I do not know how I am meant to cope!!! I love getting out and seeing everyone in class and working on things with someone to watch out and make sure my alignment etc is good…I miss it already!!!!!
Namaste xxx
Rediscovering baths
Hey everybody!
So I have not had an actual bath in years, mainly because I am scared of falling and it is a pain having to have someone help you in and out of it. I did use to have a bath lift but it was not comfortable and you couldn’t have a nice soak using it so I lost interest and stopped having them.
Then I watched a Lush haul video by one of my favourite You Tubers and I thought well they have nice products, kind to animals and they turn the water fun colours! So I got on the internet and I ordered some of their bath melts which I thought would be kinder to my skin this time of year than a bath bomb.
Last night I tried my first bath and though it was scary getting in, mainly because I am terrified of water, I do trust my husband more than anyone and I knew he would never let me fall. I have to say that it was incredibly tiring, and I felt completely drained afterwards however it helped my pain so much! I found my muscles in my back which tend to cramp a lot felt so relaxed, and my legs by the evening are usually painful and heavy felt so relaxed it was lovely.
I am definitely a Lush convert and I will be taking regular baths with their products to help my pain and to just relax. Anyone with an anxiety disorder will know how rare it is to just feel happy and relaxed and that is how I fell asleep. It was a revelation and I will for sure be bathing a lot in future!
Namaste xxx
So excited for March getting tattooed
Hey everybody!
Okay so I have found an incredible tattoo artist in the next town over from me, called Amy at Sirens Cove Tattoo Parlour Her work is so pretty and positive and colourful and I just love her style. She is going to be tattooing me in March just after my birthday with a picture of two ballroom dancers in memory of my Grandad and to celebrate over 70years of marriage between him and my Nan who was always his dancing partner.
I went with hubby yesterday to get my arm traced so that she can design the tat and I have booked the whole day with her so she can do it to perfection! I am so excited I know it will take a lot out of me because of my other illnesses, however I think everything will be worth it and I really cannot wait.
The person on the desk was so kind and made me feel at ease right away, I have terrible anxiety dealing with people, but the shop has such a nice vibe to it. I love also that I have chosen a place with all women artists which is so inspiring I cannot wait to see this incredible artist work and to find out more about things.
I do have other tattoos, but they were always walk ins and a couple of them are not too good quality and I am thinking of seeing if they offer cover ups I know some artists do not like doing them but I just want real art on me. I am so so excited I always thought tattoos made people more beautiful because it is their personality quite literally on their sleeve! I cannot wait until March I am more excited for this than I am for my birthday!!!
I am having a good week, it has been a difficult year but I am looking forward with positivity and I know next year is going to be wonderful!
Namaste xxx
Migraines and returning zest
Hey everybody!
So this week has been very up and down for me, on a low point I had a two day migraine where I felt so sick and dizzy I just rested and could really do nothing else. The picture included in this post was from day two when Gizmo was giving me so many kisses to help me feel better and strangely it did! He stayed with me all the time and looked after me like a good little doggy.
The day after I felt tired but I had to admit I was sick of the illnesses I have beating me! Since the beginning of this year I have been struggling to control my depression, my fatigue has become significantly worse and those two things together mean that I have not been able to keep up with my life.
I am sick of not being able to practice yoga and meditation every day, it has left me with tighter and more cramped muscles and with less of a positive mood. All of these things have left me not feeling myself and that is so not something I want to bring to 2017.
So I am now committed to practicing yoga every other day, and meditating for 5 minutes daily until I can get back to a point where my brain is not constantly busy. I am also going to do housework on the days that I do not do yoga and I have set up a weekly routine for my online time too. As someone with a chronic illness I have found that unless I plan and organise myself and my time I end up with not enough energy and just sitting like a blob on the sofa feeling useless.
So as I look ahead to a new and better year I hope that I can build on who I am today and be the best person I can be every day.
Namaste xxx
A lovely day and then the fallout…
Hey everybody!
Well it has been quite the week and I apologise for the late update but you will see why this happened when I explain.
So the day before yesterday me and Lee went and had our flu vaccinations and it did not hurt or anything however it does make you feel a bit rough for a few days. I however had something fun planned after so I was excited.
Someone I met at Yoga and I went for a coffee, Lee stayed home with Gizmo and we went together. I met Jess at yoga class which we both love, and I must admit yoga has bought so much good into my life because it has made me change my own mind and attitude and that has bought so much positivity, and this time it bought a new friend!
We went to a small cafe in town and she had a hot chocolate and a gluten free scone, and I had pumpkin spice latte and a huge slice of cake! It was such a nice time we just sat and chatted for ages and it really cheered me up, I love my husband but I do miss having friends to just chill out with so this was so lovely.
Towards the end of our coffee time my dad called asking if he could come over with his girlfriend to do our christmas decorations. Now this year is hard, I love Christmas but we lost Grandad this year so it is strange to not have him around. I therefore bought new decorations and asked my dad and Linda to help put them up because their house at Christmas is always perfect. We spent all afternoon getting everything just perfect and I must admit I love it (video is on my instagram).
By the time we had done that I felt dreadful and was in a lot of pain because I had walked, I had the anxiety of going out with a new friend and ordering the food I wanted, plus the injection I had that morning! I was supposed to go to yoga class that night but I had to cancel which I hated but had to be done because I was struggling to maintain balance enough to walk no matter do yoga!
By the time I got into bed I had a very bad headache and had to take some extra meds just to be able to sleep and yesterday I basically slept all day long as my body tried to recover from doing so much. This is the constant problem with Fibromyalgia that to feel better you need to exercise and to keep your body active, but to do that you need the energy to do so and if you try to do anything fun or to have a life it sets you back even more!
The moral of this is I will always keep trying to have a life, I am in a constant battle for my life and it is painful and so tiring but it is so worth it…especially when cake is available!!
Namaste xxx
Bed feels too good
Hey everybody!
Sorry I have not updated for a week, I apologise for that I have been in a strange place and I am not entirely sure how to explain where my head is right now…or my body!
I will start with my body it’s easier, so my fatigue is off the charts at the moment to the point where I am just getting nothing done. I am having like one good day a week and though I am eating well and drinking plenty of water I just feel like crap! This constant fatigue feels like when I was nursing and got home after a night shift when I hadn’t managed to sleep the day before!
It leaves me feeling like a useless blob and is not helping when it comes to my depression, which keeps telling me that everyone would be better off without me because I am a useless blob. This feeling is not helped by my dad, a man who has always been fit and healthy and has always looked down on me for not being the same. He has never understood that I am not lazy or just sad and that I am sick that is why I struggle and I feel and know how he sees me and it hurts.
Last night he came round to drop off his dog we are dog sitting and I was asleep I could not lift my head I was so tired and had fallen asleep, he said not am I feeling okay but “What would you do if you had to work for a living!” the connotation being that I was just lazy and wanted to sleep to get out of doing things…a small throw away remark to him but something that says a lot about how he sees me and what he really thinks about my illness.
Nobody in my family read this blog, which I keep to get my thoughts and feelings out about my illness…but if I am honest the fact that my family have not looked up my illness or tried to understand it hurts. I am in a strange place and this year has been so, so hard, but I want to try to get out all of the bad and leave space for nothing but good so next year I can start fresh and become the best version of me that I can be! So yes these things hurt and yes my body is super tired, but I am going to fight every single step of the way so I can start 2017 with a clean slate and get some good energy back in my life.
Namaste xxx
Tired but happy
Hi everybody!
So the last few days I have not done too much just because I have been so tired after my busy weekend. I am starting to see myself come out of that now and I can also see myself not so teary which is great! I think a lot of my crying was because I was so frustrated with my health and that I was taking co-codamol which I realised was causing me to be very teary when I saw it was doing the same to my Nan.
Yesterday I had my hair cut, I went to the hairdressers feeling like I was exposed and my anxiety was probably at a 8 1/2 out of 10 and I felt very on edge. However I have been going to that hairdressers on and off since I was 14years old and they know me well and I felt very supported and cared for there. I love the cut, it is a lot shorter than I have had before, but it looks really pretty and gives me a Ginnifer Goodwin vibe.
Now anyone who knows me knows I love Snow White and I adore Ginny so it kind of feels nice to have my hair like hers again, if you want to see what it is like then just check out my instagram —-> over there or I am @cursedheartxx
As for politics, I am not going to say much, I am actually less shocked that Trump won than I am that America let’s a man being charged with raping a 13year old even run for president!
NAMASTE xxx
