So right now I am struggling with the fact that my Nan is nearing the end of her life, she has been one of the biggest influences on my life. I have been lucky enough to have her in my life for so long and I am thankful for that, however grief is creeping in and I am aware that I do not want to fall into the same depression that I did when we lost my Grandad.
So this time I am concentrating on the good, I am thinking through every good memory I have of times with her and remembering how thankful I am that she was chosen to be a part of my life. She taught me about God and how to have faith, she was always there to listen and she never put me down or made fun of my struggles over the years like others did.
My Nan is amazing and I am determined to follow her example and to hold onto God as I go through this journey with her. She always taught me that if you have your faith you have everything you need, and that is so true. My prayer times have been so sacred to me and have helped me so much to get out my feelings as well as to send love and care to her.
I have also been holding onto the Heal Chronic Fatigue course teachings and remembering to turn each negative thought into something good. Buddhism teaches that we should not try to hold onto people or things because they are not going to always be there. I have been using positive affirmations, good memories and positive thoughts to make sure I stay as positive as possible right now.
However, self care is not just about staying postive and being happy, I let my tears fall when they need to but the difference is I do not wallow in it. I let my emotions flow now I do not judge them like I used to and I am being patient with myself as my mind is very scattered right now because I am trying to wrap my head around losing my beloved Nan. Grief can be overwhelming at times, but it is important to treat yourself well, make sure you eat well and often and give in to comfort food sometimes because it is called that for a reason!
Have you been through grief? How did you cope and what things did you learn from that time?
First of all, the neural blocks I spoke about last post are working, my head is a lot nicer without pain, I will do a full review of how I am doing in a week or so to give them a chance.
So, on Wednesday I am off to London to stay with my best friend for two nights and on Thursday we are going to see Hamilton! I love this play so much I definitely got caught up in the amazingness of it and I cannot wait to see it now it is in London as well!
I am not going to be there long, I am going to chill with my best friend she has Chronic Fatigue and Fibromyalgia as well so we rest a lot. We have a lot of similar interests so we are looking forward to spending time together and just having a nice time.
I get there by using the disabled help offered by National rail where you book assistance in advance when you book your ticket. My husband will take me to the station and there we will book in and someone will provide a ramp onto the train and there will be a disabled space for me. I will then get help off the train in London and Louise and her parents will meet me off the train, it is a good system and it works well so long as the station is manned that you are using.
I have done this before and not had problems so I know it will be fine I will take a book and be lost reading and not notice the time pass at all. I quite like the time on the train, it is scary and something I rarely do, but it feels nice to be out alone like I used to be before I got sick and for a little while I can pretend I am not sitting in a wheelchair and I am just going away for a couple of days.
Right now however my mind is buzzing with worries and fears as my generalised anxiety disorder kicks up a fuss and tries to dampen my excitement. I have had my outfits planned out in my head for weeks, and I keep worrying they will look silly or be wrong for the weather or a million other worries that have no basis in reality because I know my outfits are super cute and I will feel so good wearing them. Then there are worries about what to pack, do I need to take 10 pairs of pants? Do I really need extra socks just in case? Which pyjamas will be best…..the list goes on!
So when my brain is working on overdrive how do I stop the worries and get back to being excited?
- Breathe: Yes it might seem simple, but pausing to take deep, slow breaths can slow my mind and help me get back to feeling like I did after my morning meditation.
- Organise: To keep my anxiety down I tend to plan everything in advance, if I know what to pack and when and what baggage I am taking etc it can really help me to stop worrying so much.
- Pray: I stay close to the bible every day, and all through are examples of things working out if people simply take their worries to God and have faith that it will be sorted by God. I find this so comforting to know and I hold onto it with both hands.
- Mindfulness: This is a big part of the Buddhist faith and something that really helps me when my anxiety is pressing in on me. If I take a breath and concentrate on what I can see and hear in that moment it clears the negative and worrying thoughts from my head. In this moment everything is fine and I am safe so why worry?
- Trust: I have stayed with Louise and her family many times, they have always looked after me, spoilt me and made every visit special. They would never let anything happen to me and knowing I can trust them fully goes a long way to easing any crazy scenarios that my brain can come up with!
So after holding those five things close to me, I am managing to keep my anxiety to a minimum and my excitement to see my best friend and to finally see Hamilton on stage high. I will hopefully be doing some kind of video while I am there not sure if it will be a vlog or an interview with my best friend so make sure you are SUBSCRIBED to me to find out.
I really do hope that this cold snap is not affecting you all too much, I have been reading blog posts and watching You Tube videos by my fellow spoonies and it is not looking good! This year even in Florida there was snow, and I am definitely feeling the climate change that all the boffins have been warning us about.
For me personally it is making it harder to want to drink enough water, my pain is worse, my fatigue is hitting me and my depression is trying to push me around. Every joint seems to hurt and I even dislocated one of my knees just by turning round something that really shocked me!
So how am I keeping going and pushing through while this cold weather tries to push us to our limits? I mean we all have our tips and tricks and if we share them surely we will all feel a little better?
- Keep hydrated: It is not easy to keep hydrated, drinking 2 litres of cold water a day is not easy when you feel cold. I keep a glass beside me at all times and I know if I refill it four times a day then I have had my quota. It has mermaids on it and that helps very much!
- Hot drinks count: Keeping warm is as much about our intake as what we wear, however I struggled making hot drinks because of standing by the kettle and lifting it. But then someone on twitter said they bought this kettle by Breville that is more like a coffee machine, you don’t lift the kettle you put your cup under it! Also, it boils in seconds so no more standing for long periods of time which is incredible it saves me energy because of that and it is so much safer because you are not lifting and pouring boiling water…plus it is in the sale at ASDA which was a big help.
- Bundle up: Yes it might sound silly, but layer your clothes and there are lots of cute blankets for sale out there, like I got a very cute mermaid blanket from New Look before christmas which is so warm and cuddly! I am sat here in so many layers and blankets, and I even wear fingerless gloves in the house to help my hand pain!
- Turn up the heat: By this I do not only mean turning on the heating or the fire, but also things like heating pads, hot water bottles etc can all make the difference between being in pain and feeling good. I also often go to bed early this time of year, I have the electric blanket on and a fleece blanket as well as a thick quilt and it is so nice to lie there warm and safe to read or watch TV.
- Stay in: Most of the time I love to go out, it doesn’t happen often because my husband works, but if he offers even to get in the car and wait while he goes to the shops I am up for it. However, sometimes we have to think about the weather, if it is cold, or icy then going out can be a risk too big to tackle. If us spoonies get a chill, or fall then it can take a lot to recover so don’t be afraid to say no and stay in the warmth and be safe.
So these are some of the things I do, what do you do to keep warm and comfortable this time of year any tips and tricks gratefully received.
So I have always loved tattoos, I think they look so beautiful on the skin and really show a part of the person. They can be their favourite books, or TV and movie characters, or something that is just straight up art, but it is always something they love and cherish.
I always get the usual comments about what will you look like when you are old, and won’t you regret them…but to me the answers are I will look beautiful and no never!
I always loved old circuses and freak shows, they fascinated me and whenever I saw a ‘Tattooed Lady’ represented I would get excited. Thankfully now tattoos are more accepted and most people have one and it is much easier to find actual artists rather than relying on the walk in type that can be very hit and miss!
I decided after doing a lot of research that I would go to Amy at Siren’s Cove Tattoo Parlour in Cannock. It is run by three amazing female tattoo artists, but Amy’s style really stood out to me and I knew she would get what I wanted captured so well. She was excited to do a piece based on a photograph I had found on Pinterest of two ballroom dancers in memory of my Grandad who was a beautiful dancer and his partner for over 70years my Nan.
I was nervous, but excited about getting the tattoo finally, however I was unsure as to how I would cope with my fatigue, how my medications would affect me and how I would be able to cope with over 4hours of being tattooed. So I could take a break if I really needed to I booked the whole day with Amy, and I am glad I did because it meant that though I did not take any breaks other than for lunch, nobody was feeling rushed.
As anyone who had known me a while will know I do have anxiety issues particularly when it comes to talking to new people, however my good friend Amanda had offered to come with me which helped so much! I also found Amy to be really down to Earth and easy to chat to, she was open and kind and though she knew I had illnesses it was not something she asked about nor did they come up over the course of the day.
It was so nice to just sit with her and Amanda and talk about tattoos and general chit chat, I felt like a normal person which is rare when I am out of the house. At some point my illnesses usually are talked about, however even when I took my lunchtime meds they did not become a focal point and I loved that!
My pain levels from my other illnesses did not start up, it was just normal tattoo pain and I guess it is because that was the focus I probably did not notice, but it felt good to not be in pain everywhere else! This is so rare and I loved just chilling out and having a beautiful piece of art on my arm in memory of one of my favourite humans.
However, a few tips if you are planning a tattoo and have chronic illnesses:
- Medications: As THIS ARTICLE states, medications whether prescribed or over the counter should be discussed with your tattoo artist before getting tattooed. Some medications like Accutane can affect the healing of your tattoo, Marijuana has been shown to make the pain worse, and medications like aspirin will make your blood thinner and make you bleed more. Always discuss whether you can take your medications while being tattooed, and ask a pharmacist if your artist is not sure.
- Rest up: Chronic illnesses are tiring, but if you also suffer with fatigue you might need a nap just after having a shower. You might find that a long tattoo session will make you feel more tired because of adrenaline burning out after hours being tattooed. If you are worried that resting a lot in the weeks before your appointment might not be enough maybe talk to your artist about breaking the tattoo down into smaller sessions.
- Snack city: Taking snacks with you to an appointment is a must! Adrenaline and being tattooed will mean your blood sugars may be out so always bring snacks and if you have diabetes speak to your artist about it. I bought slow release snacks like Naked bars made of fruit and nuts, and popcorn, also make sure to bring water and stay hydrated nobody wants to pass out during a tattoo!
- Keep warm: Sitting for hours being tattooed it gets cold, bring layers so that you can keep your temperature under control and remember that you might have to get a little naked so be prepared with shorts or vest tops so your artist can easily get to where you want inked.
Overall, just remember that just because you have a chronic illness does not mean that you are not a person who wants to ride that rollercoaster or get that tattoo! Think things through, do your research, and talk to your artist they want you to have the best appointment, and to heal so you can love your tattoo for the rest of your life! If you are concerned about your fatigue or medications, just drop them a message I am sure they would much prefer that to you ending up with a less than perfect tattoo or getting sick!
PS Amy is an amazing artist so if you are anywhere near Cannock, in Staffordshire UK go see the girls at Sirens Cove!
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????
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.