Things Are Finally Starting To Pick Up | Life Update

Hi everyone! I thought for today's post I'd write a little life update for you all, as it's been so long since I shared a more chatty style post about how things have been going for me lately. After a rough start to the year, with so many things going wrong in my life, and with nothing to really look forward to, I really struggled with my mental health. As a result, my physical health was affected and so was my motivation to do the hobbies I love. I barely blogged and I felt so bad about it :( However, for the last two months I've been getting into the swing of things again and I now feel like I've got my blogging bug back! Woohoo! 

In my previous life update post, I discussed how my financial situation suddenly changed when I went for my ESA reassessment and even though my health was in the same state, if not worst, as when I'd first been granted the benefit, the health care practioner who 'interviewed' me decided that I was no longer eligible. I felt like she wasn't listening to me much at all thoroughout my appointment and it was clear she was just looking for ways to catch me up on what I was saying. It is ridiculous how they do this! Oh you have a shower sometimes without being prompted? You must be able to work a full time job then! You are able to walk around the supermarket with your mom and catch up with your friends once a month? Again, you must be fit to work!

It is so stressful going into the appointment not knowing whether you are going to get a practioner who understands, a practioner who actually wants to help people and really takes in what you are trying to explain, which for me is hard enough with my anxiety without the added worry of how the practioner is deciding to word my answers on the computer in front of them. It just happened that I was unlucky enough to get someone who decided make my life even more difficult and as a consequence, leave me in a shitty situation for the first half of 2017!

Because of my chronic health conditions, I currently have to live at home with my family and so thankfully, I had somewhere to live rent-free whilst I was stuck with no money! It's horrible to imagine how someone who lives independently and has a health problem would cope if the same thing happened to them... the government really need to sort themselves out when it comes to these health assessments! After my ESA was stopped, I had to request something called a mandatory reconsideration, and to be honest I wasn't very hopeful as I just thought that they were going to be awkward and not back-track on their decision. This turned out to be the case, and I then had to go through the tribunals service/appeals court to get the decision over-ruled. 

The appeals process can take a very long time and in the mean time, it was very hard to handle what was going on since I had no sense of security and was so uncertain of the outcome. I was scared and it was beyond stressful thinking about what their decision would be. I had to write a lot of letters, fill in a lot of forms and do a lot of waiting, until I was eventually told that I would be getting an appointment with the tribunals service and would need to wait on a date to be sent to me. At this time, I was going to my weekly psychological therapy sessions and periodically seeing the psychiatrist that worked for the mental health team to check up on how it was going with my anti-depressants. It was difficult to make any real progress when my financial situation was having an impact on so many aspects of my life. I hope I'm not sounding dramatic or anything, but it meant that I couldn't afford to go anywhere with my friends and family, I couldn't treat myself when I was feeling crappy, I couldn't work on my public transport anxiety because I didn't have any money to pay for a ticket. Worse of all, I couldn't afford any of my medication and I couldn't pay for my rabbit's food, meaning I had to rely on my family members to lend me money to pay for these two necessities for months and months! 

One day when I went to see the psychiatrist to get my medication increased, I decided to ask him whether he would write a letter for me for the tribunals service. I wasn't sure if it would help since I'd already provided evidence of my health status to ESA with doctors letters and proof that I went to the therapy, etc, but I decided it couldn't hurt to have more to back me up. This decision turned out to an awesome one since a few weeks after sending it to them, behind the scenes the tribunal service and ESA had had a meeting, and ESA randomly contacted me out of the blue to tell me that they had done a second mandatory reconsideration... not sure how that works, haha! But I'm not complaining! I was then given back my benefit and everything was put back to normal, just like that. I had lots of medical professionals saying that I couldn't work, but the psychiatrist saying it seemed to change everything! I am over the moon that everything worked out in the end. Even though my mental health recovery has been knocked back and I feel like I'm having to start over again, if that even makes sense!

Not only has this reinstatement of my ESA helped with the obviously financial struggle that I was in, it has been such a positivity boost for me, being some optimism back into my mind because months of worry. It has given me some security and normalcy again, and now I can start focusing on the important things and doing the things that makes me feel good. I don't have to carry the bad feelings I had when I was having to borrow money, and I've been able to pay everyone back. I've been able to finally go to the dentist, which I would rather not because eeeek dentists, but gotta look after your teeth and all that. I can now start making plans and giving myself stuff to look forward to, stuff to keep me going, do the things that makes that make life just a little less tough. I feel good for the first time in ages!

If you've made it this far through my post, well done!! I hope that I havent rambled too much or bored you guys! I just felt like sharing my experience meant be helpful for others dealing with a similar situation with their benefit, and I also just wanted to keep you all updated. As well as this whole ESA pickle being sorted, lots of other things that were causing me stress have also settled down and I'm just looking forward to Autumn now! It's my favourite time of year for so many reasons and there's so much I'm excited for. Not long now!

Thankyou for reading this mega wordy post! 

♥

Let's end this post with more positivity :) 

I'd love to hear what you are looking forward to!

Here are some related posts:
| Thoughts On Not Being Able To Work | The Sad Ghost Club | 

Thoughts on not being able to work | Health

Today's post is going to be a more personal one, about something that really gets to me and some days, overthinking about it very much affects my mental health. Since graduating from university, I have not been able to work. I have not been able to join in with my peers applying for jobs, going to interviews or starting graduate internships. If you are a regular reader of my blog, you will know that I am a spoonie, that I have several invisible illnesses, that I suffer from chronic pain. I have fibromyalgia, irritable bowel syndrome, asthma, generalised anxiety disorder and depression. Throughout my degree, these conditions emerged in full force and changed my life. Having to deal with physical and mental chronic illness is so difficult because of the symptoms but also because of how it impacts your everyday life. It's stressful not being able to work and I wanted to discuss my thoughts about why. 

Not being able to work makes me feel left out. It makes me feel almost like I'm being left behind, stuck at home, whilst I have to watch my friends and fellow graduates venture into an exciting new chapter of their lives. Working is fulfilling and it brings with it lots of opportunities. It's fun to meet new people and to work within a team, plus you can achieve your goals and be proud of your work. It makes me sad that I'm missing out on experiencing this, and more often than not this feeling of missed opportunities fuels my depression and anxiety. I overthink about the future and when and if I will ever be able to follow my career dreams. I live with a feeling of dread, of gloom, because I want to be doing more with my life and the fear that I won't get to do some of the things I wanted to with my life is sometimes overwhelming. 

Another problem that not being able to work brings is everyone just assuming that it's a temporary problem. People expect that you're going to recover soon and then be ready to go back to work or in my case, start looking for work. Sometimes explaining that you're not sure when you'll be able to work is hard so it's easier to just say that you're ill at the moment and although the people in my life know I struggle from anxiety and fibromyalgia, they don't fully understand what that means. Anxiety is seen as 'just abit of worry', 'everybody gets nervous', 'I'm anxious about that too' and they assume that this isn't enough to impact your life. They don't get that anxiety is a serious mental health condition. As for physical health, it's a classic case of 'but you don't look ill', therefore I must be able to work. People can't see the pain you have to endure everyday, they cannot see the sleepless nights, the never-ending fatigue, and all of the other symptoms that accompany it. So as a result, I am still asked 'have you been applying for any jobs?' whenever I have a catch-up with friends. I know they are just curious about how my life is, about how I'm getting on after university, but it's a constant reminder that I'm not working when I wish I could be. 

Not being able to work sometimes makes me feel like I'm wasting my degree. I worked so hard to get to university, to prove wrong everyone who ever doubted me and to make myself proud. The year before I went was a very hard time, the depression I'd experienced in my early teens came flooding back and I believed university would be a fresh start, the most amazing time of my life. Unfortunately, my body had other ideas and not long after I'd settled in, my health started to get worse. By the time I'd gotten to my third year of study, I was at an all time low. My mental health was really severe and it was one hell of a struggle to make it to the end of my degree. I sometimes find myself thinking about how much I endured and for what? Yes, I am proud of myself, I proved just strong I can be, but I feel lost when I think about the fact that I am not using any of the skills I learnt. 

Facebook can be a nightmare for reminding me what everybody else is doing and what I am not, and as most of us know it's really difficult not to compare. I see my fellow graduates working in zoos all over the world and I have so much admiration and excitement for them, but I also feel a little jealous too. I want to be living my dream, and coming to terms with the fact that it might not happen is challenging. I like to stay positive as much as I can, but also want to be real with myself to prepare for what could happen. 

A final issue that makes not being able to work hard is dealing with judgemental and irritating comments. 'You are so lucky that you don't have to work!', 'I wish I could just stay at home all day', 'At least you don't have to work a 12 hour shift', are just some of the comments I've experienced and I'm sure my fellow spoonies can add many more to the list. It's difficult to not get really angry sometimes, like yeah, I'm so lucky to be in pain constantly; I feel like I've worked a 12 hour shift of hard labour when all I've done is have a shower and tidied my bedroom!  I wish people could understand just how stressful it is that I don't have a choice, I am not capable of being able to work right now. 

Although I cannot work at the moment, who knows what the future will hold. I am trying my hardest to work towards recovery and getting to a good place with my mental health. Only then can I start the journey of finding out what I am capable of. There are days when not being able to work are bloody tough, but not as tough as having to deal with my health so I need to try my best not to let the opinions of others get me down and be confident in the fact that I have to deal with so many things that they do not. I am a warrior, I am strong and even though I may not be able to get my dream career, I can still enjoy my life :) I hope you all enjoyed this post and that it has been a helpful one. Sorry if I ranted too much haha

Thankyou for reading!

♥

Are you not able to work right now? What are your thoughts on that? 

Are you a spoonie that works? If so, what is the most hardest thing about working? 

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Kidney Choices Event

Today's post is about something a little different than my usual posts, but I've been wanting to start blogging more about what life is like living with chronic, invisible illness for a while now. One of the many reasons why I set up my blog was to create a place where I could talk openly about my health, connect with fellow spoonies and maybe help others by sharing my own experiences. On Saturday 12th March, I attended an NHS Kidney Choices Day event with my best friend and I wanted to share with you all some of the information from the event. It's taken me ages to get around to writing this post! My best friend has had a kidney condition all of her life which has progressed to chronic renal failure, and so we attended the event to learn more about the different treatment options available to patients and what the next step will be for her recovery. I hope this post is helpful and educational (it's going to be quite sciencey!), and I hope you enjoy reading. 

First off, how pretty are these flower cakes from the event? :) they were delicious, too! 

The event was held at the Tickled Trout Hotel in Preston, Lancashire, which is a lovely hotel. There was a room allocated for the event, filled with numerous stalls where you could talk to different professionals and charities. Attending the events were the British Kidney Patient Association, a selection of nurses to provide information on medication, dialysis and transplants, as well as dietary advice and practical demonstrations of the various machines used for dialysis treatment. It was a fantastic opportunity for patients to view the machines that they would be using and ask all of the questions they had about how they work, what the treatment entailed and what to expect when going through dialysis. The nurses were all very friendly and helpful, thoroughly answering all the questions we had. 

Before I discuss the different dialysis options that we learnt about at the event, I wanted to explain a little about how kidney failure affects the body and what dialysis is. The kidneys are vital organs that are responsible for removing waste products and excess water from the blood and making urine. They regulate levels of certain minerals in the body, such as potassium and sodium, and reabsorb any useful products. The kidney also makes important hormones, one of them maintains blood pressure. When the kidneys no longer work the way they are supposed to, they cannot perform these crucial functions and this is where dialysis comes in. Dialysis is also known as renal (kidney) replacement therapy, and what the treatment does is carry out the job of the kidneys by regulating nutrients and removing waste products from the blood via different types of machine. At the event, we were able to have a look at these machines and learn about how to use them. 

There are two different types of dialysis available, and the first stall we went to focused on peritoneal dialysis. The peritoneum or peritoneal sac is a massive membrane inside your abdomen that surrounds all of your vital organs and protects them; part of it also covers your organs and contains lots of nerves and blood vessels so nutrients, etc. can be passed to your organs. Peritoneal dialysis works by allowing fluids to be 'pumped' into the body and across the petritoneum so that they can be absorbed into the organs. The machine above is used for automated petrioneal dialysis (APD), which filters fluid into your blood whilst you sleep and is known as the APD machine (sorry that my photos are not the best quality). 

The big sac of fluid that can be seen above is filled with sterile solution that contains glucose and other important nutrients. The machine is connected via a tube to the patients abdomen and works for 8-10 hours whilst they are sleeping (but you can disconnect it briefly if you need to go to the toilet, etc.). If a patient opts for this dialysis treatment, a nurse will visit their home to show them how to properly use the machine.

The model in this photo shows where the catheter tube will be attached to the patient's abdomen, and this is where the APD machine is connected. The catheter can be neatly tucked up and dressing can be used to hold the tube close to your tummy so that you can't see it through your clothes. The nurses will provide you with information and products to keep the catheter clean. This method of dialysis is a very popular option; one of the reasons is because it can be used for people who work during the day.

Also attending the event were patients who were currently having dialysis and patients who had undergone a kidney transplant. Whilst we were talking to the nurse at this stall, she called over a man who had been on peritoneal dialysis for 6 months and he talked to us about how easy it was to use the machine and how much better he was feeling after starting the treatment. He gave us a tip about using the machine, that it could be quite noisy at night and that to solve this he paced the machine closer to the floor and it seemed to quiten the noise. My best friend and her parents were able to ask the man lots of questions and it was so helpful :) 

The other method of dialysis that is available to patients is haemodialysis, which involves filtering the patients blood through a machine. This machine does the same job as the kidneys, removing waste products from the blood, before pumping it back into the body. The machine is simply known as a dialysis machine, and patients must undergo treatment three times a week, lasting 4 hours per session, making this dialysis much more invasive and time-consuming. This type of dialysis is most commonly given to patients who are eldery, young or at a more serious stage of renal failure. It is also provided to patients who are soon to have transplants or more urgently have to begin treatment because it is quicker to organise and start than peritoneal dialysis. 

To have haemodialysis, patients must have a specific blood vessel created in their arm where the dialysis machine will be attached. This blood vessel is made by joining an artery to a vein and is known as an 'arteriovenus (AV) fistula' which allows blood to be taken out of the body and put back in via the same blood vessel. At the event, we listened to a talk given by a nurse about this machine and were shown an example of a fistula in a model arm, as well as the needle that would be used (seen on the table). The group listening to the talk was very small, meaning it was much easier to ask quesitons. Also listening was a man who was currently having haemodialysis and he very kindly allowed all of us to feel his arm where the fistula was situated. I wasn't expecting it to feel quite like it did, the blood was flowing fast through the area and my best friend described the feeling of it as 'popping candy' under the skin, it felt almost fizzy. It was a very interesting experience to feel it. Not all patients who receive this form of dialysis have a fistula created as sometimes they need to start treatment more urgently and instead have a tube inserted into their neck and treatment is given via a port (portacath) in their chest. 

As well as talking to some patients currently on dialysis, we also had the opportunity to talk to a man who has had a kidney transplant. He told us about how much his quality of life has improved since having his transplant, which was great for my friend to hear :) He also talked to us about the importance of taking the medication that is required to be taken for the rest of your life after the transplant to prevent your body rejecting the kidney, and about the preparation to have the transplant. Both the patient and the donor must have blood tests to identify their blood types and their lymphocyte antigen (HLA) type. Additionally, they must have health and fitness tests to check if they are fit enough to deal with the operation; these tests include an electrocardiogram and echocardiogram (both heart tests). We were also made aware of a scheme that people who are donating a kidney to their sibling/spouse/child/friend can opt into called the National Living Donor Kidney Sharing Scheme. This ensures that if your kidney is not a match for your loved one, a kidney could still be available via the scheme and your kidney would then go to another person waiting for a kidney, with your loved one in turn receiving a kidney. Again, it was really helpful to talk to this man about what life before and after a transplant will be like. 

Overall, I think the event was fantastic for providing information and resources to patients and their family/friends. It was great that the machines could be seen up close, and you could ask lots of questions and watch demonstrations. It was also incredibly useful being able to discuss treatment with people who have experienced it themselves and to medical professionals. It was a free event and refreshments were provided. I really liked how attentive the nurses were too; they made sure everyone was happy and comfortable, finding my best friend somewhere to sit down when she was tired. It was lovely to see how caring they were :) One thing that my best friend said would have been useful, is some younger people around our age to talk to who were going through dialysis/ who had had a transplant because we could have related more. If you or one of your friends or family members has renal failure, I recommend speaking to your local hospital about any uncoming events like this one. It really was a great and educational event. Thankyou to the NHS and all of the people who organised it!

Thankyou for reading! I know it was a very wordy post! 

♥

Have you been to an event like this? Do you have a kidney condition, are on dialysis or have had a transplant? Any tips, advice or information would be very beneficial for my friend :) 

(The majority of information in this post has come from my own knowledge and my memory of the event, but some of the names of the machinery etc. were sourced on the NHS & Medical News Today website. The NHS choices image was sourced on google).  

Invisible Illness Awareness | Health

Today is the last day of Invisible Illness Awareness Week (or is it tomorrow?) and I've been planning to write this post for days now, but having a chest infection has meant that I've had to shuffle all my posts around and my organisation has been all over the place. Better late than never, right? :) This post is going to be more personal than anything I've written on my blog so far, because I'm going to tell you all about my own experience with invisible chronic illness. Invisible illness as the name suggests is a term used to categorise medical conditions (both physical and mental health conditions) that are barely visible on the outside, but they cause the person affected a lot of pain, discomfort and have an array of life-changing symptoms. People with invisible illness are often faced with judgement from people who do not understand or narrow-minded people who say things like '...but you don't look sick'.

I'm very thankful for the massive community of supportive and understanding people all over the internet sharing positive, motivational messages and showing their support for people who have invisible illnesses. When I first developed the symptoms of my own health conditions, reading encouraging posts really helped me, and then I also discovered the 'spoonie' community ♥ Many of you will have heard of spoonies, but for those who haven't it is term that people living with a chronic illness identify with and it is based on the Spoon Theory by Christine Miserandino. Read more about what the Spoon Theory is here. Finding this community on tumblr, and later on instagram, has honestly helped me hold myself together on my worst days & find people who know what it truly feels like to deal with chronic illness. 

The adorable illustration above is by the very talented artist, Emm Roy (check out her tumblr). It's important for everyone to remember that you are strong and you should be proud of yourself for everything you've endured and all that you've overcome! Posts like these help me when I'm personally struggling to deal with my invisible illnesses. I have generalised anxiety disorder and depression, as well as irritable bowel syndrome and a yet-to-be-officially-diagnosed chronic pain condition which I believe is fibromyalgia (but it's proving ridiculously difficult to be referred to a specialist for diagnosis! >.< ). 

I experienced a period of depression when I was in high school due to being bullied and as a consequence I developed a very low self-esteem. After meeting an amazing group of people outside of school which helped my confidence grow, my depression seemed to go away. It unfortunately retuned in 2010... I went through a breakup, and the heartbreak accompanied with the stress of applying to university, college work and other various personal problems brought my depression back and it's never really gone away since then. I finally started uni in 2012; just after that I developed irritable bowel syndrome (although I've had digestive issues since I was 10 years old) and it really affected my life. I experienced social anxiety, and over time it worsened until I was suffering from anxiety in pretty much all areas of my life. As for my pain condition, I've been having symptoms since my early teens that have gotten worse over the years. At first, I thought I was experiencing the aches and pains that are a symptom of depression, but I now get chronic muscle & join pain, fatigue and lots of other health issues. Do you have any of the health issues that I do, or anything similar? It would be great to chat to some bloggers who are fellow spoonies.

Dealing with invisible illness can be extremely challenging at times. I'm in pain a lot and I get exhausted very quickly. I have to cancel plans all the time and I'm often too ill to go out. My conditions get worse when I'm stressed or randomly 'flare up' for what seems like no reason at all. I'm finding it more and more difficult to do all the things I used to, and I'm hoping blogging will help me focus on the positive things in my life that make me happy!

   ^ I thought this was a super cute way to finish my post! It's from another awesome artist called Jacqueline (check out her website here). 

To anyone who has an invisible illness, whether mental or physical, stay strong!

& to everyone who took the time to write or post something on social media this last week to help spread awareness, thankyou :) 

Thankyou for reading!

♥ 

Would you like me to blog more about life as a spoonie in the future?