My Phone Was Possessed!

Over the last wee while my phone has not been working properly. I do not know what was wrong with it, even now. My best friend’s theory is that it was possessed. Truth be told, it is as good a theory as any. It began to overheat. One day my wall paper disappeared, leaving behind a black background.Then it started to restart itself periodically. After that sound stopped on phone calls. You would type in/ find the phone number, click dial and silence. You could look at the screen and it would show that you were on a call, with the time ticking on but there was silence when you had the phone at your ear. This would only happen intermittently. Next thing that happened was the screen would randomly stop working. It was as though it wasn’t reacting to touch, which isn’t exactly great for a touch screen phone! The next thing thing that started to occur was when you were trying to send a text, the screen would start flashing and then stop responding. I had to finally accept defeat when the phone’s torch would randomly come on and then I wouldn’t be able to get it back off again because of course the screen would not be responding. So, really the theory of it being possessed might not actually be a crazy one. It got to the point that I just couldn’t deal with it any longer so I dragged myself to the shop to get it seen to and it got sent away to get fixed and I received a stand in phone. This phone was ok, it took me a while to try and get used to it, but it was ok.

As sad as it is, I was really excited when I got the call on Monday saying that my phone was back from repair and I could go pick it up. With getting the stand in phone, I realised that I had saved my contacts to my phone so I had lost all my contacts. On one hand I was upset about this, but I have since started to look at it as a bit of a cleanse. I am one of those people who never delete contacts, so I had many numbers in my contact list, many I hadn’t even contacted in a long, long time. I was looking forward in setting the phone up again and, I was just looking forward to having my own phone back, even if it had to be completely wiped to get sorted. I looked at the form that was handed back to me and in the box that was meant to contain what was wrong with the phone was blank. The conclusion I could draw from this was, nobody could find out exactly what was wrong with it.

The very next day I had to take the phone back to the shop as the phone still wasn’t properly working. The screen was still being intermittently unresponsive. The shop had to send it away again. This time the phone I received as a stand in was not a smart phone. Actually I had not seen a phone like it since I’ve been in high school! I had forgotten how to use a phone that wasn’t a smart phone. I know, there are worse problems than forgetting how to use T9 predictive text, and how to set it so that I don’t need to use it. I never did like T9 predictive text!

Now I have always had a bit of difficulty working technology, so much so that I actively tell people that I am cursed when it comes to technology! (Some people even have start to believe me). But for somebody who is not tech savvy, it is amazing how much of my life is actually connected to my mobile phone. It’s amazing how much it can be taken for granted. For example, before the shop decided to send my phone away for repair, it ran some tests on my phone to see if they could fix it first. They sent me away to wander around for half an hour. I walked out the shop to go window shop in some other ones. I went to check the time and realised I could not. I do not have a watch because I always just use my phone for the time. Then I thought to myself that it was fine, I would just phone home and ask… The problem with this being I HAD NO PHONE! Naturally, this week so far I have wanted to take a photo but I don’t know how to be able to save it, plus I know it wouldn’t be great quality, I have needed to use Google Maps for directions but did not have a phone I would be able to, had people contact me through the Facebook Messenger App so I have had to get back to them very, very late. Also when I turned the phone on I had the numbers saved of some random people on it (makes sense since it was a stand in phone) but I do not want to mistakenly leave any numbers of my loved ones on the phone once I get my own back so I have not saved any numbers which means I couldn’t contact people, couldn’t find what number was theirs and on some occasions I have received texts from friends and I’ve had to text them and ask who they are. I use my phone to write this blog, I use it to keep notes, I use it as a diary with all my appointments on it, I have apps on it to help me keep record of tablets, of my symptoms, track habits. I have apps set up to remind me when to take my medicine. I use it to keep in touch with support groups. I use my phone’s camera to take pictures of everything – things I like, things that calm me, things I want to remember, something that amused me. Absolutely everything.

I have moaned a lot about how I am not technologically minded. I tell people technology hates me (which I firmly believe it does!). However, I have been finding not having my own phone very difficult. Hopefully when I eventually get it back, it will be properly repaired… and hopefully no longer possessed.

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Walk in Water

A big part of having fibromyalgia is self care and self management. One thing I do to try and manage my symptoms is go walking through the swimming pool.

I had a limp when I walked for months. Somebody suggested to me that I should go swimming as it’s good for the joints. The problem is, I cannot swim. It’s something I always wanted to do but I have never been able to accomplish (it’s a work in progress). When I was younger I was nearly swimming but I got pulled under the water as a joke and I’ve pretty much had a fear about being in the pool since. It was then suggested to me that I should go to the pool but just go walking through it.

Now, due to the aforementioned fear, even the very thought of going to the swimming pool induced a lot of anxiety. One day I decided to go down and I walked through the pool. My biggest surprise that day was that I survived it. I could not walk very long through the pool. The fatigue hit me fast but I could get myself to the pool and out again without drowning! Since that day, I have continued going to the swimming pool at least once a week.

The water in the pool takes stress off of joints and makes it easier to walk. As well as this, the water also provides some resistance which helps make your muscles work. Water exercises are classed as low impact exercise. The movements you do in the pool does not have the same impact on the body as there would be doing it on land.

Some benefits of walking through the water include:

  • Muscle strength being improved.
  • Improved posture and balance
  • Greater movement and flexibility of joints
  • Improving general fitness levels
  • Eases stiff joints and sore muscles
  • Enhanced sense of wellbeing, better moods and hopefully better sleep.
  • Reduced pain and tiredness.

My progress is slow, very slow, but I am working on it. Like I have already mentioned, I believe it is walking through the pool that has improved my walking, however slight it may be. I have also been very lucky that I have had friends accompany me and walk through the pool with me, being my own personal cheerleaders and motivators. I still have a lot of anxiety regarding going to the pool but I am trying my best and that is all somebody can really do.

Walking through the pool is just one of the many things I have tried to self manage my fibromyalgia symptoms, just one of the activities that I am attempting in my journey of feeling through life.

“What are your hobbies? What do you enjoy doing?”

“What are your hobbies? What do you enjoy to do?” These are questions that I have been asked a lot recently. Usually by a medical professional, scribbling down some notes or filling in some sort of medical assessment. I find it a really difficult question to answer. The answer is I don’t know. I really don’t remember. From experience, I can tell you people tend to look at you strangely if you give this answer, to what they deem simple questions.

For years now I have felt like I don’t know myself anymore. Truthfully, I don’t know if I have ever properly known myself. I guess as a twenty-something year old, it is now that I begin to know myself better. There are things that I used to like doing. There are things that I used to do. I just don’t really remember, or know, what they are. It is not just my diagnosis that has made me forget what I like doing, or hobbies. I don’t remember having hobbies for a long time now. I had exams at school then I went straight to university. While I attended university I worked. After I graduated I worked extra hours, or cared for my nana or had some appointment trying to find out my diagnosis. Then when I got injured, I found myself in so much pain, and so much less mobility I now cannot do activities and tasks at all.

I am now faced with a lot of spare time, as I am currently unfit for work. I don’t know what to do with my time. The most difficult version I was asked these questions, was when I was trying to set goals with the pain management physiotherapist. This was more difficult as the questions had an extra element to them. The physio wanted to know what I liked to do that we can set goals to build up to. I do not know what I want to build up to. I don’t know what I liked to do, I did not really have ‘me time’ to do things. Now I have too much time and I don’t know what I like doing, as well as not knowing what my body will do without screaming at me.

One thing I do know I like is spending time with friends! So this weekend, Hazel and I went to Comic Con. To be able to go, I made sure I had painkillers with me and I wore heat pads to try and dull down some of the pain. I have never attended Comic Con before. I have a bit of a fear of people dressed up. Well, if I can see the person’s face I am OK…. Unless that face is painted as a clown! Then I am ALWAYS afraid! I had a lot of worries when Hazel asked me if I wanted to go with her. However, I had a great time. There was so much things to see, that I didn’t know what to look at first.

Now, I am not saying that going to Comic Con is a ‘hobby’ I have. I did enjoy myself that day though, and it is something that I would attend again! Trying new things can be a great time. Exploring new activities means that you might find something you enjoy doing, or find new hobbies. Even if you know how you like to spend your time, finding new activities contribute to your growth and development.

Right now, I am telling myself that it is ok that I do not know what I like to do. It means that I can, hopefully, have fun as I explore options and find out, while getting to know myself. I am still fairly young, it is ok not to know myself completely. Everybody is just trying to feel their way through life anyway – I am no different.

Lady Gaga announced she has fibromyalgia…

Lady Gaga has a documentary coming out on Netflix this month which features her battle with chronic illness. This week she announced that she has fibromyalgia.

When I hear of anybody with fibromyalgia, I feel for them. As somebody who experiences the pain and hardships on a daily basis I can empathise how bad their battles may be. Fibromyalgia can affect everybody differently, and can affect your life differently from a day to day basis. This makes it hard to treat, hard to manage.

I am interested in watching the documentary being released later this month. I think it will be interesting to see how fibromyalgia is portrayed on the film. I recently watched a television programme that had fibromyalgia featured and I do not think it was featured well. It started off well but did not show the multiple battles, or different treatment types that may work. It made treatment seem like a “one size fits all” idea, and that is definitely not the case. It would be great if there was a treatment out there that would definitely work for everybody however that is not the case.

Lady Gaga works hard for her performances. She does a lot of singing and dancing. I worry that people will see that she has fibromyalgia and still performs so could potentially alienate people who suffer from it. I know for a fact that there is no way that I could put on a show like Lady Gaga! I can’t even go shopping for twenty minutes without crying. I can’t even shower without having a lie down afterwards. Already, I get told things like ‘[insert name here] has fibromyalgia and they can [insert activity here].’ I can already hear Lady Gaga being used as a potential example – “Lady Gaga has fibromyalgia and she can still work/perform.” It can be hard for people to see how debilitating fibromyalgia can be, especially when it is an invisible illness. Also, Lady Gaga will have access to different, and potentially more, treatments to try.

That being said, a famous person speaking out about fibromyalgia will definitely spread awareness. Her announcement has started so many conversations and that is very important. It has put fibromyalgia in the spotlight and shared information about it to people who may not have heard of it. For some people, it has brought about hope. It is a reminder that they are not alone in their battles.

Fibromyalgia does not discriminate, it affects people from all walks of life.

(The End of) Fibromyalgia Awareness Week 2017

Today marks the ends of Fibromyalgia Awareness Week 2017. It’s been a fairly difficult week symptom wise for me but I like to think that I may have spread some awareness, even if it was just the guy from the local shop across the road since I spoke to him a wee bit more coherently than some of the conversations I have had. I like to think, even if the brain fog was bad people were able to see the effects that it can have on daily life. Even though it is the end of Fibromyalgia Awareness Week that does not mean that spreading awareness should just stop. Keep that conversation going! 

Continuing on from last post, here is the points from the 7th – the 10th….

Something that helps you manage fibromyalgia

Truthfully I have not found anything that fully helps me manage my fibromyalgia. There are a few different things that I do to try and help myself. I am still in my first year of being officially diagnosed. I am just newly on my journey. There are many products and ideas out there for me to try… The thing with fibromyalgia is what works for one person may not work for another… and the only way that you are going to know if something works for you is giving it a go!

  • Yoga/Pilates class – This class was suggested to me as it is gentle and the teacher gives you options and can adapt moves for you. This is a weekly class and my cousin Emma, comes with me to it. Part of the class is relaxation. I am just doing what I can do, which is not a lot at this moment in time. In fact, quite a lot of it is me just lying down listening to the music, just breathing.
  • Walking through the swimming pool – I can not swim, and going to the pool increases my anxiety. However, I do believe that walking through the pool has been helping me. I got injured in work in February and since then I have had a bad limp. Since I have started walking through the pool, the limp comes and goes… I know this does not seem like much but I was constantly limping for three whole months! Now I just limp most of the time. I am taking victories where I can and this is definitely one! I can only walk through the pool for 10-15 minutes before the fatigue becomes too much, and I need to leave the pool so that I have some energy for the showers, getting dressed and getting home but I am trying. The pain physio nurse has also given me some exercises to do in the pool too. The exercises themselves are quite gentle and simple but they make me so very tired… and I can not do many of the movements. But I am working on it!
  • BloggingFeeling Through Life. I started this blog to sort some of my thoughts, to share my experiences and to hopefully spread some awareness. There is something therapeutic in writing this, so thank you to anybody reading this. Plus in typing everything out here I tend to moan less at my family, which can only be a good thing!
  • Colouring in – adult colouring in books are a bit of a trend at the moment and has been for the last wee while. I have always loved colouring in, I even coloured in before the adult colouring in books became a ‘thing’. I find that it calms me down and keeps me busy. The only problem now is quite often I get a bit ‘wobbly’ (I shake) and I tend to go out the lines sometimes which I really hate but it has not put me off colouring in. I think it is good for creativity, it is good for seeing details, good for distracting!
  • Reading or watching movies, TV shows etc – watching movies or TV programmes or reading is a good way to get lost in a different world. It is great escaping from this reality into a different world, a different time or different situations.
  • Heat – I use hot water bottles and heat pads a lot! It’s a bit of a hard one really though, sometimes heat helps and other times I feel hot water bottles and heat pads are too warm and feel like they are burning me. I like cosy socks and blankets. I like to wrap a duvvet around me. I like to cocoon and form that protective layer around me. Maybe I am living in the hope that one day I will metamorphosize in my cocoon and emerge a beautiful butterfly?
  • Write things down and tell my sister – I write a lot of information down in the hope that it will sink in and I will remember it. I have notes everywhere. I tend to type them down in my phone too. A problem I have from time to time is I forget what the note means, which is not ideal. This is why I tend to tell Kaitlyn, in the hope that she might remember.
  • Listening to my body – I try and listen to what my body is telling me. Not going to lie about it, I am not very good at it sometimes. I have a tendency to push myself too much and suffer for it. It is a thing I am hoping, that as my journey progresses, I may become better at. I think this may be key to managing my fibromyalgia.

These are just a few examples of the things that I do to manage my fibromyalgia. This is by no means the only things that I try and there will be many different things out there for me to try and manage my fibromyalgia but the above is just a few that I have seen helping me manage symptoms at the moment. If anybody has any suggestions then please do send them my way.

I also have medication prescribed to me from the doctor to try and help me manage my fibromyalgia. I am still going through the process of seeing what medication works for me.

Something that you know now that you wish you had known at diagnosis

At diagnosis I wish I knew that there was different options of treatment and it was a trial and error method in finding what works for you. When I was diagnosed, I felt I was given a diagnosis, got a wee booklet about fibromyalgia and sent away to deal with it. I hardly knew a thing about it. It is a condition that needs a lot more research. Everything is quite vague, guidelines have phrases like, “In some cases, exercise is found to improve fibromyalgia symptoms…. Some find that exercise exacerbates symptoms.”

I also wish that I knew that fibromyalgia is more common than I thought.

Most of all, and I guess this feeling started before diagnosis, I wish I knew how much this diagnosis affects life. It affects every aspect of life.

Something that you are proud of

I am quite proud of this blog. I have had some messages and comments about it that give me a warm, fuzzy kind of feeling. They make me feel like I am still able to do something. I am able to complete a task. On a daily basis, there are so many tasks that I cannot do or cannot complete. This blog is keeping my mind going. It is keeping me thinking. It has me setting myself deadlines and goals and achieving them. My goal is to post every Sunday, there has only been one Sunday I did not post but I posted on the Monday instead. This week, I have even posted twice! Achievement!

Something you are grateful for

I am grateful for my friends and family! I am so lucky to have such good people in my life and be surrounded by such love. They inspire me to try and become a better person. They remind me that I am not alone, I am loved and I am wanted. They encourage me to keep on trying – through my health journey but also through life in general. I am so blessed that I have people who believe in me and love me.

Fibromyalgia Awareness Week 2017

Fibromyalgia Action UK (FMA UK) has set this ‘photo challenge’ for Fibromyalgia Awareness Week 2017. I am really bad for seeing a social media challenge and adding my own spin to it. I think deep down I think I’m a rebel! So in this fashion, I have decided to do a blog post instead of photos. What I have decided to do is take each day as a topic. Today, I will cover the points from the 3rd – 6th and on Sunday (my normal posting day) I will cover the points from the 7th – 10th.

Your diagnosis

I was formally diagnosed after a long time, after a very long time, on 23rd December 2016. I remember this date very well because I was in a bad mood having to go to the hospital so close to Christmas. My cousin, Donald, came with me to the appointment and waited for me in the waiting room. I was so nervous. I hate going to the hospital. I was so worried about what was going to be said, what was going to happen. My GP had said that he thought I had fibromyalgia so was going to refer me to a rheumatologist. So the consultant officially diagnosed me with fibromyalgia. I had very mixed feelings that day about my diagnosis. Truthfully, I continue to have very mixed feelings about my diagnosis. I was relieved that I finally had a ‘label’ for what was going on with me. It felt like I had been going to the GP to no avail for a million years. It took a lot of visits to the GP, a lot of blood tests, a lot of getting told “it was just stress”/ “it’s just anxiety”/ “it’s all in your head” (Disclaimer: No GP told me “it was all in my head”, it just felt that way), a bunch of increasing tablets, some counselling, a lot of tears, a lot of moaning and a change of GP to even feel that I was being taken seriously. I was worried about what this diagnosis meant for me and means for my life. I know there is no cure. I know it’s about “treating the symptoms” but what does that mean for my quality of life? Am I going to have a good working life? Am I going to be able to keep working? Is this going to continue to affect family and friendships? Am I going to have a social life? All important questions! All I really know is, I am on a journey, and I may not find all the answers out, but I just have to keep trying and keep going forward.

 

What it’s like to have an invisible illness

What’s it like to have an invisible illness? It’s a pain! No pun intended. You have so many changes and feelings, both emotionally and physically, going on within your body and nobody seems to acknowledge it. You get so tired that you can’t even shower without having to have a lie down and you just get labelled lazy. You have so much pain, that sometimes you can’t move. Sometimes you are physically sick with the amount of pain you are in or you burst into tears. Of course this goes on behind closed doors and people think you are being a “drama queen” and exaggerating. Since people can’t look at you and physically see something wrong with you, it is just assumed that you are “fine”.

 

What you’d like people to be more aware of

I would like people to be more aware of invisible illnesses in general, not just of fibromyalgia. It would be a lot easier if people just kept in mind that they do not know what is going on in a person’s life. That person may be struggling and just need some support, a little bit of kindness shown to them.

Also, I would like people to be aware that fibromyalgia affects everybody differently. It affects me totally different than how it affects ‘Julie’s sister’s boyfriend’s mum’s colleague!’ Seriously! The amount of times I have heard something like that is ridiculous. Asking something like “[insert name here] can do a, b and c…why can’t you?” is soul destroying. That person is only going to replay this question over and over again and beat themselves up over it! However, what can be helpful is saying what works for another person and suggesting it as something to potentially try or consider.

 

Your support network

I am lucky when it comes to my support network. I have lost friendships as a result of this condition and I may not be as close to some family members as I would like to but those I do have close to me are amazing!

Kaitlyn (my sister) for example, can do everything for me some days. I’m talking making sure I’m washed, dressed and have had my medication and something to eat. Not just saying “Sarah, get dressed”, but actually physically helping me put clothes on. She tries to arrange shifts at her work so that she is available to take me to appointments. She is my organiser, she reminds me of phone calls I need to make, things I have to do, appointments needing made, when to take my pills. Everything really. I am also particularly close to Donald and his fiance Laura. Donald lives around the corner from me and the amount of times I have just appeared at his door in tears is too many to count! He is very good at comforting me, while letting me get it all out. He makes a cup of tea, gives me a hug and listens to my worries, my pains, my feelings and reminds me that I’m going to be ok. Laura, always reminds me that I am not alone and that she is only a call, text, message away. In that respect I am very lucky. My friends, too, are always reminding me that I am not alone and are only a message away. My friends are amazing, they arrange things in such a way that I can participate in it. That might be them taking their car, and insist to pick me up and take me to the event and bring me back home. They stand at the back of gigs or find seats so that I can sit or at least have something to lean on. They have left gigs early with me. In fact, Hazel has left many gigs early with me because I have not been able to cope. Claire has stopped exploring Berlin with me when we were on holiday so that we could search for a pharmacy instead because I needed painkillers. My friends are there for my tears and they listen.

I am very lucky to have such an amazing support network. I really hope that they all know just how much I appreciate them and the things they do for me. I really hope they know that I love them and I am sorry that I share so much details with them, too much details in a lot of cases, but by doing so they have helped settle me in one form or another.

Petals of Remembrance

 

Today I attended a beautiful remembrance service arranged by Accord Hospice. Accord Hospice is a hospice in my home town, Paisley. Accord’s purpose is to provide compassionate, palliative and end of life care to people. They strive to then continue to comfort loved ones through the bereavement process and remembrance. They “…seek to optimise all that brings meaning, comfort and hope, ensuring that we value and celebrate life in all its diversity” (part of the Accord mission).

Every year the hospice puts on a service of remembering in honour of the people who have passed away and their families. Each year is a different theme. Today the theme was petals. The hospice had sent a petal shape out to my papa and the idea was to write the name or a memory or a message of remembrance for the loved one you have lost. Petals were provided at the back of the hall for anybody who wanted to write their own message. If you look at the picture below, all the different colours on the stage are all the ‘petals’ with all the messages of remembrance. It felt like such an intimate moment when people went to lay their petal.The service was a chance for people to come together to remember loved ones through song, music, poems, prayers, memories and love.

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At one point of the service petals fell over us all. Realistically, this was people up the stairs, walking along throwing petals over everybody but it was a beautiful moment. It was like receiving your own message, or sign, from your loved one.

The theme of nature is particularly important to me. There is a tree near the family plot in the cemetery. It is a beautiful tree, full of blossoms.On the day that we buried my nana’s ashes, as my papa and my uncle lowered the casket, I got tapped on the head by a branch from the tree and petals fell off. I took this to be a comforting pat on the head off my nana. Another important part of the service was when “On Eagles Wings” was sung. This was a hymn that we picked for my nana’s funeral.

On the 20th of May my papa, my aunt and uncle, my sister and I stayed overnight at the hospice to be with my nana. The staff at the hospice were fantastic! Not only did the provide the best care to my nana but they also looked after all of us. At 7am of the 21st (of May) we were altogether with my nana as she passed away. This service was very important. It was a chance for me to think about my nana, to think about time spent together, to think about her. Around 5am on the morning my nana passed away I was in the room with her, holding her hand and “Con te partiro” came on. At the time, I was so emotional that I started to cry even heavier. I was so annoyed by it. Calming music was being played to try and block out the sound of the nebuliser, and to help keep the atmosphere calm to help us and my nana. “Con te partiro” is translated to “Time to say Goodbye.” Now, in hindsight, I think it was an important time to have. Many different pieces of music was played that night and I cannot remember any of them other than ‘Time to say Goodbye.’ This is such a poignant memory for me, and it is one that is going to stay with me for life. I thought about how cheeky my nana was. She was so funny, and the faces she pulled. I thought about all the outings we had, the arguments we had, the cries we had, the laughs we had.My nana passing away was one of the most difficult time of my life and having a time and space to reflect upon everything, i feel, has been beneficial for me.

I have written about my nana before. She was such an inspiration. She made such an impact on people when meeting her. Everybody comments on the loss that they feel without her here. She was loving, strong, determined, loyal, stubborn and she fought a brave battle. If I can become half as charismatic, present and loving person as my nana was, I will have succeeded in life.

Check out more about Accord Hospice here: http://www.accordhospice.org.uk/

 

On a completely different note, today marks the start of Fibromyalgia Awareness week. Later on during the week I think I may add another blog, about fibromyalgia. If anybody has any questions about life with fibromyalgia, please feel free to ask. I may not have all the answers but I am happy to speak about my own experiences.

For more information check out http://www.fmauk.org/