-plops down in a chair- Wow I had such an amazing few days celebrating my birthday! I have been spoilt by the people who mean the most to me and I have eaten more processed food and sugar than I usually eat in a year! It was so worth it!
On Thursday I was woken early, it was my birthday and I had presents to open and then I was told I needed to get showered for a surprise! The surprise was my best friend Louise and her mom, Gill coming all the way from London for the day and oh my goodness it made such an incredible day! We sat and chatted for aaages, my mom came for a little bit too and then my mom had to go home so she couldn’t come out for lunch which was a shame. However, me, Lee, Louise and Gill went to a local pub we love for lunch.
We had such lovely food and more talking and I cannot even express how much it meant to me to have them with me for my day. I so wish we lived closer but I cherish every time I get to see them and it made my day so special to see them. In the evening, my dad and his girlfriend Linda came over and we just had a really relaxed night chatting and we had a take away of Indian food which was so yummy.
Yesterday was part 2 of the celebrations as me, Lee, my Nan, my dad, Linda, and some close friends Annalise, and Jess and Paul all came out for Afternoon tea. This was at a local hotel which is really lovely they have a lot of weddings and afternoon tea is lots of nice tea in lovely china teapots, and sandwiches, cakes and scones. It is so very English but really relaxed and just so nice to eat lots of yummy food and spend time with the people who count.
Now, I have a few illnesses that mean these two days were difficult for me and though I think it was worth it I also had to have it all planned out for a while! I started resting ready for celebrating at the start of the month, I definitely needed to because being social and talking as well as the walking needed are all so tiring. Getting tired also means that my pain is worse so I have to be aware if I take more meds that they will make me drowsy and I need to be patient with myself and let myself rest.
It is now the day after and I feel hungover though I did not drink anything and that is because of all the sugar and processed food I ate, I feel nauseous and my pain in my shoulders and the back of my head feels awful. I usually try to eat plainly, to make my food from scratch and to not eat take away or cakes and things. I am someone who tries to be as healthy as I can and I do notice if I eat food that is less healthy I can tell. Today I am drinking a lot of water to try and flush my system out and help my body filter out the less than healthy food.
I think however much we try to look after our health it is good to remember that there are special occasions and events where you need to enjoy yourself. Of course, afterwards your illnesses might flare but if you have had fun I find I don’t tend to mind it as much.
I was a qualified nurse before I got sick, but even I have to admit modern medicine has kind of let me down! I am constantly told I am on so much pain relief they do not know what to give me if it gets worse. On top of that I was not diagnosed with anything for five years, and then ten years after that I was told I didn’t have Multiple Sclerosis and it was Fibromyalgia instead!
So I have been looking into alternative therapies this year and to be honest it is…well overwhelming! It is almost impossible to know where to start and there is so much information out there it is almost impossible to know where to begin and what is genuine!
Thankfully I have yoga, that has been my exercise for years now and though I still use it as my exercise I also use it for symptom management. I found bedtime yoga can help my muscles relax and my head to calm ready for bed. I have found routines for headaches, for muscle cramps, and it opened up a world of treating my body my moving it instead of resting all the time to try and treat myself.
On top of this I have meditation, I am still learning how to do it alone, but Yoga Nidra and guided meditation on you tube are brilliant. They are just lying and listening while focusing on breath and it helps my mind to let go and my body to relax. If you have not tried meditating you are really missing out on something that can really help.
However, then I got a little lost and for a few months I did not know where to turn, the internet is a great resource but also a little overwhelming! So I went on Etsy and looked up Fibromyalgia wondering if there was anything people were selling could help and I found THIS
It is a massage oil that has lots of herbs and essential oils in it and you just rub it in where it hurts…it is amazing! I used it on my arms and the pain and cramping just melted away! I really felt relaxed and it smelt so wonderful I just cannot say enough about it. On top of that I got the balm which helps with joint pain which I get a lot in my hands and it is so soothing and really nice to use. If you have fibro I would certainly recommend them!
Lastly CBD oil it is cannibis without the illegal drug bit! I thought it was illegal here, but it turns out that it was made legal in January here in the UK and so when I saw a sign for it in my local health food shop I rushed in there! I chose the lowest dose and I just use it under my tongue at night to help with my pain and insomnia. I am spending much less time napping since I started it and I also found my anxiety has lessened by using it!
The question I pose now though is where do I go from here? I know I want to save for a diffuser, but what alternative therapies do you use? Are there any must have oils or books that would help me? Please comment me links to books, purchases and articles as well as any advice you might have?
So it is 20years since Buffy the Vampire Slayer first aired, this is my favourite show of all time for so so so many reasons but most of them I will tell you about today!
I remember I did not know about Buffy until the second episode, my best friend at the time told me about it and I immediately added it to my list of shows and became addicted. I bought all the episodes on video, I had videos of interviews with the cast and would buy the magazine every week! It was my obsession and the greatest show I had ever seen…and is yet to be beaten to be honest!
I became a fan of the show before I became sick, and it was a show I loved and enjoyed but it was not as special at that point as it was to become.
In 2002 after only being qualified as a nurse for a year my life changed at a festival I was at. In the afternoon my leg swelled up and I couldn’t walk on it, the next morning I went to my doctor and was given antibiotics because they thought it might be an infected insect bite. Gradually over the coming months I became numb all over, I stopped having the energy I had and was forced to leave my job and move back in with my parents. I quickly became depressed and lost, going from job to job just trying to keep my head above water.
Then one day I opened up the Buffy magazine and there was an advert for a convention to meet Mercedes McNab who played Harmony and Rudolf Martin who played Dracula. This started my love of going to signings and conventions to meet my favourite casts and collecting their autographs. I loved making new friends and I needed them because my illness had meant that I lost all my friends that I had when I was well because of having to move, and also because of being too sick to do fun things with them.
I started to also do a thing online called roleplaying, which I still do now, where I write as characters from TV and film shows. This hobby helped me to carry on being creative, I made so many friends through this and many of them are still in my life now. I found my friends I found through this amazing show understood me better than anyone I had met before and they looked after me when I was not feeling well at events. I started to see that I was worth more than being well, that even if I felt sick some people cared enough to still be around and be there for me.
This show also tackled mental health issues, the main character Buffy Summers suffered a lot with depression and problems figuring out who she was in the world. Back then this was not seen much on shows and it meant so much to me to be able to see someone else struggle like me in the world. Since then characters like Raven Reyes in The 100 and Bucky Barnes in Marvel have carried on this feeling for me and helped me to identify with my own feelings and thoughts and to start to believe in myself.
Now I know for the non-geeks out there this all probably sounds insane, especially as I was never a teenage girl through this…but trust me when a TV show or a film captures your feelings and thoughts so perfectly it can help ease your fears, it can bring you friends and self worth then you will love it forever too.
Happy Anniversary to all the cast and crew and thank you!
So I do not drive, and my husband has epilepsy so if he has had a seizure within the last year he cannot drive either. Thankfully, I do not leave the house very often and we have a great support system of family and close friends who take us to hospital and doctor appointments.
Now I have always had social anxiety when I was a child my parents and the people around me just said I was shy and sensitive. I was often forced to do things at school that would make me physically sick like talk in front of the class and even going to a class alone would give me so much panic I thought I was going insane!
However, when I got older and other mental health issues like depression came into my life and I had counselling I came to understand more about social anxiety and how it is not just being shy or sensitive. It is crippling and caused me to lose friends, and avoid things like speaking on the phone, talking to people at the supermarket etc just to avoid the overwhelming panic that this brings.
When I go to the hospital my husband will usually try to organise it around his work, and this is because of my anxiety but also because of my memory problems. I have a lot of issues with remembering people’s faces, where things are like how to find the exit after leaving a room, and knowing what happened after an appointment and what happened can be so hard.
However, this is not always possible and this happened yesterday with my physiotherapy appointment I had a lift from a family friend and when he takes me he will wait in the car with my dog while I am inside. So this means I have to navigate a lot on my own, talking to receptionists, taking the lift, sitting alone waiting, trying to remember what is said, explaining myself, and navigating back to the car. On top of this I needed to go to the pharmacy and deal with that so my anxiety level was on 11/10 and I was moments from a panic attack all day!
My anxiety started the night before, where I lay in bed thinking through the route through the building and my head thinking up scenarios like me falling over and people laughing, me getting lost, people staring etc. When this happened I used lavender pillow spray to help calm me down and help me to sleep. There are many recipes to make your own on Pinterest and also you can buy things like this online or in chemists and essential oils shops.
All day leading up to the appointment was stressful as I tried not to forget anything and I think I changed clothes about four times! Thankfully I use a backpack so I can take more things than I need which helps calm me down a little. I tend to carry things like tissues, cough sweets and lipbalm because I worry I will get a runny nose, or cannot stop coughing and also I lick my lips a lot when I am nervous! If you have triggers just carry things that help in those situations will ease your fears so much and certainly a trick I learned as a teen taking exams!
As I made my way to the appointment, and waited I used breathing techniques that my therapist gave me when I had counselling which is breathe in slowly to the count of five and out to the count of five and do it counting how many times you can do it without your mind wandering. This is a Buddhist way of meditating and actually how you learn to train your mind to quiet during meditation, it is very effective as you have two sets of numbers to concentrate on and so you cannot panic. The slow and deep breath also helps to calm your fight or flight and adrenaline in your body so you stay calmer.
My fears about forgetting things and explaining things is difficult, however I find practising it a couple of times in my head helps and asking my husband what to say helps. I also always ask the doctor, nurse or therapist to write down what was said, and they usually are more than happy to write a few notes or send some things over to you.
Overall yes if you have social anxiety these things will not take that feeling away totally, however it does help to have these things in your back pocket to use. They take practice and time and effort, but if you are willing to put in the work you can push through and overcome things that scare you.
So first of all I have actually been referred three times to physio, first time for my shoulder they injected it and said they would call with an appointment and I never heard back. Second time was for neck and upper back pain and I wanted some exercises or something to help ease them, and I heard nothing. Third time was for my thumb and I heard nothing so we called the doctor who referred me and they said they should have given me a number to call but the doctor must have forgotten! Thanks for the pain I had in that time while I waited!
I explained this to the physiotherapist I saw and she said unfortunately they know nothing about the other times and only knew about my thumb….yeah not impressed doctor!
Anyway, the doctor had said he thought it might be the start of arthritis as it runs in my family and can be experienced with fibromyalgia. However, after examining my thumb she thought it was just an inflamed and irritated joint and gave me some exercises to do at home to keep and improve my range of motion as it is my dominant hand.
She said maybe in the future they might inject the joint or give me steroids but they wanted to try these exercises first. I was thankful for this because anyone with chronic illness will tell you that they do not want more tablets if they can help it!
She is also going to try and find me a different type of walking stick that does not put my weight into that joint like the one I use now and this will help me to be able to help the joint heal and walk safely. I was also told to ice the joint every day to help bring the swelling down so I am feeling good about this. I am thankful it is something that can easily be treated and the therapist was really nice which I was thankful for too.
So this week my body is trying to kill me plus I am listening non-stop to Ed Sheeran so be thankful I am here and let’s just get into it shall we?
So the other day I was in the shower, it was not the best of days so I was listing in my head the things I needed to do…wash my face, shampoo my hair, wash my body…then I realised what I was doing and I wondered if any other Spoonies out there do the same thing?
Since the shower I realised that I don’t just work out my spoons (The Spoon Theory) for the week, or just for the day, but within each task I work out how many steps are in that task so I know if I have enough energy to make it just to the end of the task!
Now I know that for a long time my dad thought I was lazy, I think he understands better now but for a long time he did. I am sure other people in my life assumed the same but I wish people knew how much work goes into being a person with a chronic illness.
Just making sure I have enough energy to get through the day is tiring and probably a lot of that is trying to get through the brain fog as much as possible to mentally make sure I do not forget a step and can get through it! I am literally making lists within lists and my life is turning into the damn Matrix!
List making whether it is in your head, a journal or on a calendar is a very important part of being a Spoonie, it is very difficult to work out energy levels for the week and plan accordingly, but it comes with practice. I tend to keep it all in my head but I am thinking of starting to use a journal of some kind so that I can get it out of my brain a little.
So I am asking my fellow Spoonies do you do this? What are your tips and tricks to get through a task?…And most importantly what is your favourite track on Ed Sheeran’s new album????
So on the 16th of this month it is my birthday, and as I thought about the things I wanted out of the year ahead the main one was to look after myself better and to be kinder to myself. These are both things that I struggle with, I think most people do but I want to talk about how we all need to change this!
So when I was at school I had problems with eating, I often skipped meals or did not eat at all, this continued into my university years and I got very thin…the thinner I got the more compliments I got and so the cycle begins!
Now I am older of course and I can look back and see how society is constantly telling us that we are not enough. Even models and actresses get teased by magazines if they have a bit of cellulite and they have personal trainers and their perfectly calculated meals delivered to them! So it is no wonder that we struggle with dieting and wanting to fit into that dress or look good naked, but I am taking a stand!
It is incredibly hard when you have chronic pain and fatigue to work out, to get out, to do the things society says is normal. It is impossible to look like society wants when you have a wheelchair, or a walking stick, or you need incontinence pads, or you have bandages etc! I often find it hard to feel like myself because I walk with a limp, and I use walking aids, and it is impossible to feel sexy when you have a flare and cannot work out at all so you put some weight on!
I am currently a size 12, I was this size when I met Lee and it seems to be the size that my body is the happiest at. I would like to tone my body more, which will happen with my yoga and by just being patient and working on keeping up with exercise. I think practising yoga has taught me a lot mainly that I need to be patient, it is not about being perfect or getting the pose now. It is about appreciating the journey and loving yourself and your body enough to work within it’s limits to learn and to grow.
This month I want to focus on my mental health, last year I lost my Grandad and it spiralled me out of yoga daily and going out with the dog and eating right into a very bad depression. Starting this blog was a way for me to get out of myself and to become a better person by not sitting stewing in my thoughts all the time. I want to love myself, I never have and I desperately want to look in the mirror and not see a thousand flaws, to be with people and be fun and not someone who puts them self down! I want to feel sexy, and think people are checking me out not just staring at my walking stick or wheelchair wondering what is wrong with me!
I found recently I have been struggling to eat right to plan yummy meals that will keep me and my husband healthy and I want to get back to that. I also want to bake again I miss that, and I want to be the best person I can be Buddhism and yoga have set me on this path and I want to continue down it.
So instead of worrying what you look like, or putting people down, or skipping meals or dieting let’s enjoy life again! The press and TV and film have changed the way we see ourselves and not for the better. I am going to be posting daily on my instagram something I love about myself…maybe you could join me? Let’s start a revolution!
I am someone who finds it easy to be organised and to motivate myself, I love to learn new skills and to get things done. However some days it just feels like an uphill battle to even get out of bed and this is mainly for me because of fatigue and pain!
This morning I woke up in pain, a usual day and so I got up and headed downstairs to make myself a tea and have my tablets. However, when the usual time I have to wait for them to kick in had long passed and I was still in pain I realised it was simply going to be ‘one of those days’! I also had so much fatigue I was still in my nightclothes at lunchtime so it was definitely not going to be an easy day!
Now on days like this when I still had my blog post to write, and my fansites to update and the bathroom to clean and a shower to have it would be easier to just curl up in a ball on the sofa and nap all day…however then I would have to deal with guilt when my husband came home from work and I had done nothing…this leads to negative thoughts and possibly ugly crying so here are some things I do instead!
- Condense your list: Think about what you absolutely NEED to get done today. For me this was my blog, I try to update every Wednesday and Sunday so I try not to miss this. The bathroom needs doing but if I do it tomorrow morning instead it will be okay we can deal with it for one day. Then I decided to take a bath before bed when hubby is home so he can help me, this meant now all I have to do is write this post and maybe my fansites if possible before my nap yay!
- Self Care: Think about what you need to do to feel human, like I changed into fresh pyjamas, and wiped my face over with some Olay wipes I have for days like this. Take any meds you are due and make sure you drink enough water and eat so you do not feel worse!
- Be kind to Yourself: This is important!!! Realise that you are sick every day and you are a badass so usually you manage to get things done, but today not so much so rest up!
- Naps are our friends: Sleep is something that is precious when you have a chronic illness, you get insomnia at night and yet you feel like you have just finished a night shift on any given day! I admit I love to nap, but I hate insomnia so I try to stay awake if possible so I can sleep at night. However, today my body is screaming for me to sleep so I will be curled up on that sofa just as soon as I am finished here!
- Remember to smile: When you finally lay down and rest remember those things you did do and don’t lie there worrying or giving in to the negative thoughts about things you did not get done. Not only did you manage to get some of the things done you did THE MOST IMPORTANT thing and that is looking after yourself. Always listen to your body it will let you know when it needs a day off so rest up and carry on tomorrow!
So on January the first I started a 31 day Yoga programme with Yoga with Adriene and I was determined that I was going to get back to daily yoga no matter what! Now we are nearing the end of February and I did day 15 today!
I got to the end of the practice and felt like a failure, I am half way through something I should have long finished because of my stupid fatigue! I used to do daily yoga and I felt good because of it, in fact at one point last year I was able to get up do a little housework, 20minutes of yoga shower then take my dog on a short walk!
It is hard to not look back at that time and think I am now a failure when at the moment I am having to alternate housework and yoga every other day and I am needing a nap every afternoon! My fatigue seems to be getting worse and I wish I knew a way to combat it and the people who say simply do yoga…well I am trying!!!
So I finished my yoga, my legs were burning, my head aching and I felt totally fed up, I knew if I tried to just meditate I would just end up even more frustrated. So I turned to Yoga Nidra which is a type of guided meditation and they do lots of types on you tube from simple 5 minutes ones to all night guided sleep! Check them out if you have insomnia so good!
I lay on my back and closed my eyes in Savasana or Corpse Pose and felt the Earth holding me up, it was so relaxing because I felt like I was a giant just laying on the Earth feeling it spin through space. It was somewhere in this meditation that I realised my body is able to keep up with this yoga practice at the moment, but I felt proud of myself anyway. I have not given up I keep coming back determined to finish the 31 days, so what if I am not doing it every day the point is I would if I could!
Yoga and Buddhism had taught me so much, but yet again it has given me a big moment of clarity, I am not well like most people however I have things that most people also do not have…determination! I set myself a goal and no matter whether I get there today, tomorrow or in 30years it is only through patience, self-love and motivation that I will achieve my goals.
It would be easy to give up and say I have these illnesses and just sit around and watch TV but I still want to learn and grow as a person. I still want to achieve things and yes I kind of still have a five year plan…never give up!
First of all I am so sorry that I missed updating the blog on Wednesday but I have had a very trying week and I really want to explain!
On Monday my external drive crashed, it just stopped talking to my laptop and I was panicking so much! I have saved so much stuff since I started online over a decade ago and it was all on that drive…word docs, writings, fanart you name it if it was geeky it was there and I could not get to it!
Thankfully my Grandad’s friend John knows tons about computers and he installed a programme to get the files off the external drive and move them to the cloud where they will be safe unlike on an external drive! The programme took days and I couldn’t get to anything, I had lost all my bookmarks and all my passwords and so I was stuck!
To say my anxiety was high was an understatement, that in turn made my brain fog, and my pain worse. I spent the last week trying to keep myself sane and to keep busy. I made my first sewing project a pillowcase from the Craft Club Box my mom came for the day and helped me and I was so proud of myself.
I loved making that, but sewing and concentrating all day made me feel so sick the next day and I have been resting a lot as well as trying a new recipe and basically taking some me time! I finally managed to get things sorted, the files I wanted the most I managed to save thankfully and I found all my log ins and now things will be back to normal here.
I do just want to say though that this experience kind of carried on from my last post about letting go of my bad times with my depression. I used to be online from the moment I woke up until I went to sleep, I avoided facing my illnesses and what they meant for my life for years. This happening right after me deciding to clear out my DVDs makes me think maybe the Universe agrees with me! It is time to let go of some of the destructive things I used to do and to be a better person.