Trying to live with Chronic Illness

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Taking my time coming to terms with new diagnosis

Photo by Ron Dauphin on Unsplash

Hey everybody!

So a few weeks ago I was told I had two illnesses and you can read about them HERE, so I have just taken myself a little time to come to terms with them. On the one hand, Spondylosis was not a big shock I have been having a lot of upper spine pain and now I know what it is I am happy. I mean well, not happy happy, but now I know what it is I can look up things to help and get practical about things if that makes sense?

But with hEDS, I am finding a lot of anger and frustration because as I research and read up on this illness the more upset I am feeling. I am finding my being diagnosed fell at the right time because I found out at the beginning of EDS awareness month so there is no shortage of informative articles floating around like this one by the Mighty, or this one by Mystripeylife.com which I am extremely thankful for!

However, the more I read the more angry and frustrated I feel, and I think it is because I have so many of the symptoms and I find out decades after and I want to go shout at my old Drs “I TOLD YOU IT WAS REAL!” I didn’t walk until I was almost two and would drag my left leg when I crawled, my skin is very soft to touch and I bruise very easily, I was in so much pain as a child but when I went to the Dr they would tell me it was simply ‘growing pains’, I have always had balance issues, I had to have a lot of dental work and teeth removed as a child and the anaesthetic never worked as well as it should have…and I can go on!

Knowing I suffered so much to have nobody listen, to know that I just pushed through and forced myself to act like I was fine for so long ignoring the pain it upsets me. But what upsets me the most, is that younger me thought I was being dramatic or I was too sensitive everyone else gets by with these things! On top of that, I had family members make fun of me, and put me down because they did not believe me or understand that it was real…they believed the doctors they thought it was in my head.

Now I don’t want you thinking I blame those members of my family, because I don’t, they were simply misinformed and trusted doctors and dentists who themselves did not see the whole picture. General practitioners can often miss rare illnesses because they don’t get the time and there are so many rare illnesses there is no way for them to know them all. Logically I know this, logically I am thankful to now have answers and to have a way to move forward with greater understanding hopefully from the medical professionals I meet in future.

Yes I think it is legitimate to feel anger and frustration when you find this sort of information out, I need to be patient I need to allow myself time to feel these things. But, as I am a Christian and a Buddhist, I try to refrain from looking back too much and to be in the moment so I guess what I am saying is that from now on I will be updating my blog every Monday again! I gave myself time and I was patient, but this blog means so much to me, like my You Tube channel, it gives me a voice, it is a chance to connect with others and make friends.

So I guess I am incredibly thankful to people in the EDS community for welcoming me, answering my questions and giving me advice when I have asked. I feel so lucky my diagnosis came at the start of the EDS awareness month I am thankful I have a diagnosis that finally makes everything make sense…so yes anger and frustration is there but I am choosing to look at things with a grateful heart.

Namaste xxx

 

Pacing yourself for special occasions

Hey everybody!

Yeah so 16th March I turned 40 and I was not exactly happy about it, though with my poor health over the years and my struggles with depression I was determined to enjoy it. This was also my first birthday without my Nan and Grandad I was closest to so I wanted to make sure I made them proud and had fun, so I had to look at pacing for special occasions so I could survive my plans!

I knew I had to do two things so that I could celebrate with both my parents separately and so I decided to spend my birthday, which fell on a Friday, at my favourite museum. The Black Country museum is so cool they have recreated a small Black Country town and it is amazing I just love it and I have a vlog ready to put up on my You Tube channel so make sure you are subscribed!

On the next day I arranged something a little less out in the world and involving so much getting out of my wheelchair, so I decided to go for afternoon tea. I have been doing this for the last few years at Weston Hall and I invited one of my best friends Jess, my mom, her parents and two of her sisters as well as my lovely husband.

I knew that recently I had been working on my fatigue with the Heal Chronic Fatigue Course, so I was wary of letting all that hard work slide by doing too much. I also did not want to end up triggering a flare of my chronic illnesses and I was aware of the fact that my husband has epilepsy. This causes him to be very tired and suffer with headaches and extreme fatigue if he does too much which can trigger a seizure, I have to look after him too.

What I had not factored in was Lee wanting to get a new phone so we ended up going to a local shopping centre on the Thursday and he treated me to some presents because he is so kind. So I went from rarely leaving the house, to being out in the world in potentially loud and anxiety triggering situations for three days in a row. Honestly, I was not sure I would survive, but after resting all day yesterday (Sunday) today I was able to get out of bed and I have noticed I am tired and my pain is up, but it is manageable and yeah…I am pretty amazed so I thought I would share what I did to try and keep on top of everything:

  • Utilise wheelchairs when possible – The museum I went to supply wheelchairs if needed which is so useful as I cannot walk far and I struggle with pain which means I need to be able to sit down regularly. However, as this is a living museum I did not want to take my own wheelchair as it would get filthy, so after checking their website I was thankful to be able to borrow one there. Checking this took no time and it saved me so much energy and pain because we could wheel me through all the coal and cobbled streets without worrying about it and I could just enjoy!
  • Be prepared for change – Always make sure you are well rested before a group of events are together, no housework, no exercise just rest in the week or so before to save up spoons just in case your husband decides to take you shopping!
  • Utilise alternatives – I suffer very badly with social anxiety, so I bought some CBD anxiety tea from my local health shop, when we got home each evening from these things I took a cup. It helped me to relax and rest and it also helped my pain. I also used my heating pad in the evening and massage oils to help my pain and fatigue. We all have different needs, but finding things that help other than tablets from the doctor will support you so much when you are trying to cope.
  • Schedule rest – This is so important! On all three days I was in bed by 6pm with my heating pad and Netflix just resting and watching TV. Always make sure you have times when you can walk away and rest, whether it is a little nap while your husband keeps family company at Christmas, or just making sure you are in bed extra early, this is so important! If you have busy days make sure you allow time to rest and making sure family understand it is that or things do not happen is essential to cope with being social and chronic pain and fatigue.
  • Dismissing guilt – It is so easy to feel guilty for having fun, I think society makes the disabled and chronically ill feel like they have to just sit on the sofa and do nothing. However, yes I did see friends and family, yes I ate too many calories and yes these things made me feel more in pain and more tired. But I am of the opinion that my life has value and I refuse to be forced to never see friends and to not have fun for fear of not meeting others expectations. I will not let anyone ruin my great memories and fun I had for my birthday which was so hard for me to cope with but it was lovely and yes I am still smiling!
  • Be honest – I am lucky, my friends and family understand I have limitations, not everyone has that. So instead of pretending you are well, pushing through the pain and staying up too late so others are happy…be honest. Speak up about needing a wheelchair, or to take a break and grab some tea and extra meds, and do not let anyone make you feel less for needing these things.
  • Give yourself a break afterwards – Planning fun activities is harder for us spoonies, but do not forget to look after yourself afterwards too. Yesterday I did not get out of bed until lunchtime and I was back in bed by 6pm, I made sure I got all the water I needed and I rested I made sure I had this scheduled and I did not guilt myself or expect anything. Yesterday was a difficult pain and fatigue day, but so worth it for those wonderful memories!

I hope these tips and tricks I utilised will help you to be more social and to celebrate things that need to be celebrated. So many of us stop being social because of our health, but hiding away is detrimental to our mental health and we will lose our ability to keep friends and lose valuable fun memories if we do not take the time to plan and be careful.

Namaste xxx

Travelling with anxiety

Photo by Eva Dang on Unsplash

Hey everybody!

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?

  1. 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.
  2. 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.
  3. 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.
  4. 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?
  5. 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.

Namaste xxx

Pushing passed Guilt with Fatigue

Photo by Xavier Sotomayor on Unsplash

Hey everybody!

So it is getting closer to Christmas, with plans for visiting relatives and going out for dinner on the day as well as visiting my elderly Nan are all hovering over me. Of course, my body has chosen right now to get a cold and to hit me hard with fatigue that leaves me laying on the sofa unable to think straight no matter get dinner going!

My wonderful husband has epilepsy and his medications make him drowsy and tired, yet he comes home from work and makes dinner, helps me undress and get into bed and listens to me natter on and on about TV shows and Instagram and whatever else is in my head!

The problem is that I am constantly hit with guilt, I am forever saying sorry to him and that drives him insane! But I do feel so guilty, about him having to cook after being at work all day and I just hate that I feel like a useless blob on the sofa!

So much of our self-worth in society is tied up in what we do for a living, where we live, how we look and if you are unable to keep up, judgement comes from inside as well as from society at large. I find even my mother, who has Multiple Sclerosis, give me looks and makes comments when I ask Lee to pass me something or to help me. So when it even comes from those we think should understand how are we as chronic illness sufferers meant to keep our heads up and not drown in guilt?

I know many of you will understand what I am saying and will probably agree with a lot of points I have said, but my question is if we cannot do the housework and we need to put on family and friends how do we push passed this guilt that comes with fatigue? How do I as a woman who prides herself on having a clean and tidy house, deal with being unable to keep up with keeping everywhere clean? How do I pass jobs on to my husband when he is already tired from work and not feel like the most awful failing housewife?

Usually, I like to give tips and ideas but this time it is me asking for them: How do you keep your self worth going when you are unable to work or keep up with housework? How do you push passed the guilt that comes with times of extreme fatigue? Answers in the comments please? I will hopefully do a follow up to this post soon with some conclusions and helpful ideas to help my fellow Spoonies keep their self worth high!

Namaste xxx

Coping with depression at Christmas

Photo by Erwan Hesry on Unsplash

Hey everybody!

Well it is that time of year again, I have cards to make, presents to wrap and right now I just want to fast forward to January and be done with it! Now do not get me wrong I am not a Christmas hater and I am not one to be compared to The Grinch at all! In fact,  I always loved this time of year and looked forward to seeing my family and giving presents to people I love. I enjoyed the cheesy films and decorating the house….

Then my Grandad died, and my parents split, my Dad now has a new family he is spending Christmas with and my mom is spending it with her friends and my Nan is staying in the home she now lives in for her dementia. This will in fact be my first Christmas not eating dinner with either parent or my Nan, me and my husband are going to be eating Christmas dinner together with our dog in a local pub.

I have decorated our living room, but that was so tiring and the added time and effort it takes to clean now I have extra things to move makes me wonder why I even bothered! I have not yet recieved a single card, and no invitations or planned time with friends leaves me feeling extremely lonely.  I feel very lost and nothing feels right and I have this unsettled feeling all the time which is triggering both my depression and anxiety and overall I am just lonely and miserable!

However, I am not the sort of person to give up and I am putting a few things in place to try and keep my mental health under control while I navigate this time:

  1. Meditation and prayer: I am someone who tries to keep myself centered and I do that by looking to God. I try to spend time every day meditating and talking to God, my faith is something I take very seriously and it really helps me. Now I am not trying to say everyone go find God, but I am saying we all have something that helps keep us grounded whether that is a best friend, favourite song or your faith. Concentrating on and holding onto this really helps in times of trouble so don’t knock it until you try it.
  2. Exercise: Depression wants us sitting around feeling useless and doing nothing, I find walking around my living room, doing Yin Yoga, or just dancing to a song I like are all things that can really help shake off depression even just for a little while.
  3. Keeping busy: It literally took me most of today to work up to being bothered to write this blog post, but that is the depression not me who loves writing my blog. It is best to keep busy in order to stop those negative thoughts clouding in and taking over. No matter whether it is learning a new hobby, reading or just planning what next year has to offer try to keep your mind from taking over!
  4. Mindfulness: Now this is simply taking a moment to concentrate on this moment without judgement. Just stop and take a breath, take in your surroundings and stop those thoughts it really can change everything to just step back and realise we live in this moment and not in the past or future where depression and anxiety live.
  5. Be thankful: I try every day as I get into bed, to list things I am thankful for over the day. Things like doggy cuddles, cups of tea, being warm, not needing to nap, etc. It really helps to stop looking at what we do not have and starting to appreciate what we do have. This time of year adverts are everywhere, people on social media bragging about buying so many presents, and movies that show the ‘perfect christmas’. In reality, nobody needs 500 presents, kids just want to be loved, and perfection does not exist. Be thankful for what you do have and can do and stop trying to keep up with the Jones’!
  6. Avoid adverts: This is related to the last one, but I turn off or mute all adverts on TV and you tube, I do not want those toxic 2 minutes in my life! They make me feel like I want so much and none of it is actually needed! Take the pressure off by turning away from adverts and instead take those moments to be mindful, or cuddle the dog!

I hope these small things are manageable for you, and I hope this holiday season is better than you imagined, and if you ever need to talk my emails are always open.

Namaste xxx

  • Samaritans (116 123) operates a 24-hour service available every day of the year. If you prefer to write down how you’re feeling, or if you’re worried about being overheard on the phone, you can email Samaritans at jo@samaritans.org.
  • Childline (0800 1111) runs a helpline for children and young people in the UK. Calls are free and the number won’t show up on your phone bill.
  • PAPYRUS (0800 068 41 41) is a voluntary organisation supporting teenagers and young adults who are feeling suicidal.
  • Depression Alliance is a charity for people with depression. It doesn’t have a helpline, but offers a wide range of useful resources and links to other relevant information.
  • Students Against Depression is a website for students who are depressed, have a low mood or are having suicidal thoughts.
  • Bullying UK is a website for both children and adults affected by bullying.

The importance of reconnecting with old friends

Photo by Anete Lūsiņa on Unsplash

Hi everybody!

So yesterday an old friend from school came round to see me for a cup of tea and a catch up. Now to most people this might seem very boring and not out of the ordinary at all but it meant so much to me and I want to explain why.

First of all, she got in touch with me because she found my blog, and when she did and started reading she was amazed at how similar our symptoms and experiences with chronic pain and fatigue were. She emailed me and we started to talk and arranged for her to come visit, and if you have been reading my articles for a while you will know how lonely I get so this was something I was so excited for!

I was nervous because of the amount of time that had passed since we had last seen one another, but I needn’t have. We chatted away and in no time found ourselves amazed at how similar our chronic illness journeys were and how we both have struggled with accepting our illnesses and having family understand why we are sick.

I started to think about all the chronic illness warriors that I know through social media, you tube and this blog and wondered just how similar our paths seem to be. It in incredible that no matter what our diagnosis, we all walk the same path and it is this fact that connects us all. I started to realise that so many of us are in reality so isolated and alone, spending weeks at times not seeing friends or even leaving the house just like me!

Seeing my friend was wonderful, I felt so tired and in pain afterwards but I have not stopped smiling since because I am so happy! I feel like I am part of a worldwide network of chronic illness warriors who have many different illnesses and yet we all walk a similar path! So if you ever feel lonely or just need to talk my instagram, twitter, facebook and my email all have ways to get in touch with me and I would love to connect with you!

Namaste xxx

Nights out with chronic illness

Yesterday I went out with friends and today I wanted to talk about how I kept up and had fun without pushing myself too far

Photo by Brooke Lark on Unsplash

Hey everybody!

Yesterday was a big day for me, I love making new friends and going out, but when you have an anxiety disorder it can easily spiral into something you force yourself through instead of enjoying yourself.

I was going out with one of my best friends to celebrate her getting married, we first went out to learn to make cocktails in a really nice bar, and then to a different place to eat a lovely meal. We went out to a big city close to where we live, but it was still an hour each way on the train and walking from place to place though thankfully they were less than 5 minutes walking from one another.

I woke really early and was ready to go a long time before I needed to be, now this is normal for someone with an anxiety disorder. I was ready early because I didn’t want to make anyone wait or let anyone down. But waiting has it’s own problems because then I have time to worry and make up scenarios in my head. To combat this I watched you tube videos on my ipad, they are perfect because they are short and you can watch them without worrying too much about getting caught up in them.

I bought myself a new dress to help with my confidence as well, and though my  dress was 1950s style I felt so pretty in it and not like I stuck out. I think that with a little make up really helped me to feel like I could hide if I felt overwhelmed, but my friend and her friends and family really were lovely and helped me so much! Even when a man in the bar made a comment about me looking like his mother because of my walking stick I managed to shake it off and just have fun!

I made sure as well to have a few drinks and to have fun, but to be careful not to go too far and to drink lots of water as I did so. I had such a fun time, I ate well and the best part was going behind the bar and making actual real cocktails! They all tasted so yummy and fresh and perfect for summer I could have stayed there drinking them all night!

The walking has left me with aching legs, however people walked at my pace and looked after me which I appreciated so much I have been left behind in the past and it does not feel nice at all! I also came home early before I was wrecked (thank goodness for adrenaline am I right?) and got straight into my pyjamas and got into bed.

Today I found my energy so low and my head is aching, my legs hurt, my feet are swollen and itchy, and overall I just want to sleep…but it was so worth it! I think going out with friends is just as important for mental health as meditating and I just wish I went out with friends more often!

Namaste xxxx

Travelling with Chronic Illness

I am going to London for a few days so I thought I would talk about how I cope with my illnesses while travelling Hi everybody!

So I am really excited I am going to London tomorrow for a few days to spend some time with my best friend Louise and to see some plays. London is not the most disabled friendly of cities and I find it can be a case of lots of planning when it comes to making it happen. Thankfully, Louise has lived all her life just outside London, and has suffered with chronic illnesses for most of her life so she is used to dealing with things and is great at navigating the city.

Both she and I suffer with fatigue so we have nothing planned during the days we are going to simply rest and concentrate on the two plays we have booked. Booking disabled tickets for theatres in London I have found to be a bit of a lottery, sometimes you get a free ticket for a carer, sometimes you have a terrible view it is all down to the individual buildings.

Planning travelling around the city can be difficult as well because the Underground system was built so long ago and most of the stations do not have wheelchair access because they do not have lifts. I have however, enjoyed seeing the city through travelling by bus, which can be hard to navigate, but all busses have lift access and wheelchair spaces.

Louise and I however, usually go by taxi, we are both disabled which means her parents do not need to worry about us as much and you can just sit back and relax. I will say though be aware that some taxi drivers can get grumpy when they see that you have a wheelchair so make sure to mention you use one when booking!

The biggest obstacle for me is not so much travelling within the city though, it is the journey to London, which thankfully is one train with no changes! They are easy to book, British Rail has a disabled booking line and you can call to book assistance which will be help on and off the train. Because I will be using my wheelchair they will use a ramp to get me on and off the train and I will get help both ends and both times I will be using it.

My anxiety comes into play because though I have booked assistance every time I have travelled, there has been a couple of times when nobody has come to get me off the train! This is incredibly scary and I get afraid that I will be left alone on the train unable to get off or taken somewhere far away! Thankfully my friend is meeting me off the train in London, and my husband is meeting me this end, I will of course be adding photographs to my instagram and updates to twitter so make sure you are following me for my London adventures which I will tell you all about when I get back!

Namaste xxx

 

How 13 Reasons Why made me thankful

Today I talk about the TV show 13 reasons why and how watching it helped me realise how far I have come Hey everybody!

First of all if you are planning to watch 13 Reasons Why and have not yet seen it this post will contain spoilers so come back to this after watching. Also, there will be mentions of alcoholism, social anxiety, depression, and suicide in here so please be aware of that if you choose to continue.

So in 2 days I had watched all the episodes and the documentary of the TV show 13 Reasons Why. This show is about a girl called Hannah who leaves behind 13 cassette tapes each one singling out a different person and why they are part of the reason she decided to commit suicide. The show sugar-coats nothing, it is hard to watch, there are times I had to pause it and walk away, or I fast forwarded, cried…yeah it is a tough, but I feel important watch.

Now, when I was a teenager I was very much a mixture of Hannah and Clay, I was incredibly depressed, I suffered with social anxiety and I was suicidal. I used alcohol as an escape and I am sad to say that I was at times suicidal. I was nervous to watch this show as I worried that it would trigger old feelings and thoughts and it did but I coped with it in a very unexpected way…I became thankful!

There is a scene where Hannah and Clay both imagine what their futures could be like if she had not killed herself. This is a really sad scene, yes we want to see this glimpse, but also knowing they could never have that now was so upsetting. That scene got me thinking a lot about the times I was suicidal and wondered if I could have ever imagined where I am now?

Back then life seemed so bleak, the last time I considered ending my life I was in my early 20s, my fiance at the time had left me, I was living with my parents again and I was sick. I had not been living with my illnesses long and I was still waiting for diagnosis and to be honest everything I tried I seemed to fail at. Also as an added bonus, my father became incredibly frustrated and angry to see me so depressed and would shout and say things that I am sure now as I look back he would immediately regret.

But not long after this I started dating, I joined two dating sites and had a few dates on one and only one date on the other…that one date was my soulmate Lee and we have been married seven years! He looks after me, he is kind and funny and totally gets that I have illnesses but he never makes me feel like a burden. I have a wonderful dog, Gizmo, we live in a really lovely house and we are incredibly happy.

Over the past few years I have worked hard on my social anxiety, I have had counselling,  I can go out for a short walk with my dog, I can even talk to a shop assistant without wanting to have a total breakdown. Every day I struggle with my anxiety and depression but I have the tools now to cope with them and to work through them. I might not be able to work, but my self-worth comes from my family, my friendships and how good of a person I am.

13 Reasons Why made me feel so incredibly thankful that I did not choose the path that Hannah did, I kept fighting and things got better. As a teenager I was not able to cope with this harsh and stressful world, but now I have the support and the tools that make it easier.

Namaste xxx

Getting a new tattoo with a chronic illness

today I talk about getting a new tattoo and things to think about if you have a chronic illness Hey everybody!

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:

  1. 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.
  2. 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.
  3. 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!
  4. 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!

Namaste xxx

PS Amy is an amazing artist so if you are anywhere near Cannock, in Staffordshire UK go see the girls at Sirens Cove!

 

Hello

Hi there I am Beverley, I am a Buddhist Christian trying to find a way to live with Fibromyalgia, Chronic Fatigue Syndrome, Depression and General Anxiety Disorder. I live with my Husband Lee and our dog Gizmo and our budgies Rey and Finn. I live in England and look forward to getting to know you better. I will be updating once a week.

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