Laughter is, and will always be, the best form of therapy

Sometimes the hardest part about having a chronic illness is not knowing what is next. Will I ever feel better? Will the pain ever become bearable? Will I be able to work again? Have all of my plans for the future become dreams rather than achievable goals? It is hard to have a vision for the future when you can barely plan from day to day. It feels pointless to dream, to set goals, to desire more from life . I have watched people I know start their careers, begin to build their future and as much as I am happy for them, I honestly envy what they have. It does sometimes feel like time stood still since I was diagnosed.

So, how do you move forward when you are diagnosed with a chronic illness that will never go away? How can you even begin to plan for the future when you can just about cope with the present? Right now I am still asking myself these questions and am not entirely sure how to answer them but, I have been looking for inspiration.

Since resigning from work last year, I felt like I had lost my sense of purpose. Working full time can result in you getting stuck in an infinite loop of too much work,  not enough sleep and a non existent social life.  When I left I found it hard to adjust to life outside of that loop as people I had met along the way began to drift and I no longer had a routine or an income. As much as it may sound like a dream come true, not having to set an alarm and being able to essentially do what you want when you want, it is not. I miss work. Yes, these are words that I never thought would come out of my mouth. I do not miss the constant stress and pressure that came hand in hand with the job but, I miss the sense of belonging and purpose.   It is near impossible to find a work from home jobs that is legitimate and I would know, I have spent many hours scouring the internet looking for one without any luck.

It is important to remember that your diagnosis is not the be all and end all and it is important not to dwell on it. The same goes for anyone and everyone that is going through a turbulent time and do not see a way out. You can’t start the next chapter of your life if you keep re-reading the last one. If there is no way out then create your own. Don’t compare yourself to others. We all have our good times, our bad times, goals and dreams and each one is different from the next. When you feel like you are falling at the first hurdle whilst your friends are racing ahead, it is so easy to measure yourself against them. Your experiences will make you stronger and will better prepare you for obstacles in the future.

Sometimes it is hard to even believe that you have any strengths when you spend a lot of time feeling weak and defeated. It is easy to focus solely on our struggle and pain rather than look at the bigger picture.

One thing that has begun to help me believe that I do still have a bright future ahead of me is a Fibromyalgia support group. At these groups find myself surrounded by people that I don’t have to explain myself to and have learnt how to deal with problems that I am only just facing. Surrounding yourself with people who understand your situation not only gives you people to talk to but, also gives you a sense of belonging.

Right now, instead of focusing on what you don’t have, instead of focusing on the pain and fatigue, just focus on the present and belonging in the moment. You can lose yourself in all of the stresses and worries of everyday life that sometimes you can forget to take time out to appreciate the little things.  There are so many beautiful reasons to be happy and although being in these situations can make you feel like you have reached a dead end, these is a way of building yourself up to be bigger and better than ever.

My journey has only just begun for me but, I am determined not to let my condition define who I am and my future. 

Tough situations build strong people

Maintaining a good, healthy relationship when an invisible illness becomes the unwanted third wheel.

Relationships intimate or otherwise are usually a private things that you keep quite close to your heart, locked away in its own heart shaped box. However, when it comes to having a chronic illness or knowing someone that does, you are not prepared for the impact it will have on your relationships. As much as it is no one’s business what happens behind closed doors, I find that reading about others experiences can be quite reassuring when I know that I am not the only one going through it.

Maintaining a good relationship when one of you is reliant on the other can be quite difficult. During my many hours of scouring the internet and reading articles and blogs about my condition and ones that are similar, I have rarely found anything that truly expresses how Fibromyalgia can effect someone’s close relationships.  In this blog I wanted to be quite frank and open about everything that I have been going through and this post will be no different. One of the main things I have learnt is chronic illness does affect your relationships and shows you how strong those relationships may or may not be. Not only do you find out the real strengths and bonds you have with others but, you also find out who is willing to fight your corner no matter what the problem is.

Living with variable health can make it near impossible to plan things in advance as you don’t know how you are going to feel from one day to the next. But what I have found is that you both need to acknowledge the fact that you will not always be able to do everything that you want to. There are days where I can only muster the strength to sit and watch countless films on Netflix, drink infinite cups of tea and just enjoy my partners company and that is ok. Some days I feel like I can go out and explore and these are the moments I feel lucky to have, even if it means numerous days of recovery are to follow.  Pushing through isn’t always the answer and if plans need to be changed then your health and wellbeing should come first.

Thankfully, in my situation my partner is very understanding and supportive. When we first met I wasn’t in the condition that I am in now but, thankfully in his eyes nothing had changed and he doesn’t see me as the girl with Fibromyalgia but, still as me. When I have bad days and spend endless hours in bed, he still tries his best to keep a smile on my face. On days were the pain is somewhat manageable, he makes sure that I don’t over do it but, we do make the most of this time before the pain rears its head again. 

  As Fibromyalgia gives off a negative outlook, sufferers can find it difficult to keep up appearances leaving their partner to feel the need to keep everything quite upbeat and positive. Unfortunately, on days were your having a flare, have only had a few hours of broken sleep and you have had to cancel your plans it is very hard to not feel like the world is against you and positive thinking is hard to come by. I find that communication is the key when dealing with something like this together but, you do have to find a balance. It is easy to overload your partner with details of every pain, every worry and everything that is causing you to stress but, this will do more damage than good.

I have someone I can always rely on and who stops me from feeling guilty when I am unable to do things I once could. I can’t thank him enough for continuing to treat me like Jodie and not a chronic pain patient. We have our little disagreements and arguments but, as much as the pain tries to reek havoc, we always come out the other end stronger than ever. Find someone that will love you in any condition and under any circumstances.

P.S Just in case no one told you today … You are good enough and don’t let anyone tell you otherwise 

I know it sucks and its scary but its time to be brave

It is a scary and isolating place to be in when your health starts to decline, especially when your life has only just begun. Only last year I was able to go out, work and live a relatively normal life without pain and fatigue, simple thing I took for granted. Now I have an illness that makes getting out of bed feel like an accomplishment (and sometimes the only one).

My experience with Employment & Support Allowance

In light of the governments recent plans to cut ESA, I felt it would be important to tell me story that is the whirlwind experience of being lost within the benefits cycle.

Those with long term illnesses like myself are unable to work at no fault of our own. However, when you cannot work you have no earnings, you lose confidence and in some cases your condition can deteriorate. Yet all of those factors considered you are forced to apply for benefits that make your situation worse. When I applied for employment and support allowance I had no idea what to expect yet didn't expect to be faced with such a horrible experience. I was in the mists of finally getting a diagnosis but, as I am sure you all know, appointments for specialists are very hard to come by and even if you are referred the waiting period is endless.

I live at home with my family and as much as much as I may be in a better living situation than others, at 22 I wanted to be able to pay my own way and not have to rely on the generosity of my parents. This is what drew me in to ESA as I felt me condition was progressively getting worse and I needed some sort of financial support to get me by.

I phoned ESA and made my initial claim which consisted of a series of somewhat unrelated question. However, in hindsight this was the easiest step and did not prepare me for what was to come. After completing the 50+ page booklet that I had been sent detailing different aspects of my health and how they effect me from day to day the waiting game began. Unfortunately, at this point I had no evidence in terms of necessary documents so my decision was solely being made from the booklet I had filled in. Soon after this I had a medical assessment. Now at this point I thought that I would actually seen by a qualified medical professional but, oh was I wrong. I was sat opposite a young man who was quite clearly there to just type and read questions that had been provided for him. It was so reassuring to know that my benefit was going to be left in the hands of such a “professional”. The medical assessment basically consisted of me re answering the questions I had previously filled out and a test of simple movements such as moving my arms, legs and bending down. I felt very intimidated by the whole experience as I felt like I was being interviewed. They seemed to be trying to catch me out as if I would pretend that I wasn't well enough to work.

Weeks after this the dreaded letter arrived in the post stating that I had been awarded no points and was therefore deemed fit for work. In all honestly in the eyes of these people if you can talk, type and you look well you are the picture of health. I was gutted as I knew this was only going to be the beginning. The medical assessment does not cater for those with an invisible illness which makes it near impossible to not be overlooked. I had to then go through a mandatory reconsideration detailing why I felt that those who made the initial decision were wrong and hope that the original decision would be over turned. It was not.

Now my final stage was to then apply for a tribunal hearing. I don't know how anyone else has felt in this situation but, I felt like a criminal. I had no idea it would be so hard to get even the smallest amount of support. Long story short sitting in front or the judge and qualified doctor was a seemingly horrible experience. Any answer I gave to their questions was torn apart and I was left with no leg to stand on. As the condition affects me from day to day and brain fog can leave me unable to think clearly the judges only response was that I would be capable of working a part time job as a cleaner or receptionist as these jobs do not take any real intelligence. I was upset and insulted by her blunt remark and at this point words had escaped me. Their decision was not changed and all I was left with was a piece of paper stating that I was fit for work.

Since then I have had to claim Universal Credit and look for work even though I did not feel fit enough to do so. I managed to get to the interview stage of a job funnily enough working at the job centre as a work coach but, as the interview drew closer I was becoming more unwell and was unable to attend. I am now in the process of applying for ESA again as I have no other choice. I am in a slightly better position than I was the first time around as I do have a diagnosis however, I still do not have enough evidence to back up my case. I am hopeful that within the 13 week period I will be placed in the support group and deemed unfit for work but, at this time I cannot predict what the future will hold. I do also now have the support from a Fibromyalgia group that I attend and the ladies that I have met have been so helpful and supportive.

I feel that doctors are not fully educated in Fibromyalgia and do not understand how debilitating and exhausting it can be. As they are the first point of call when battling for a diagnosis I feel that they have essentially jeopardised my chances of being able to claim as the essential tests have not been done and the referrals are not being correctly made.

I never wanted to be on benefits. I would love to go back to work and start building a career but, right now this is not within reach and I am not well enough to do so.

I am happy to answer any questions that people may have and I have added a list down below of some of the things online that I have found so helpful during the early stages of reapplying for ESA.

http://www.benefitsandwork.co.uk/

http://www.fmauk.org/

https://www.facebook.com/fibroawarenessuk/?fref=ts

Your speed dosent matter, forward is forward

Everyday is a fresh start and sometimes the smallest step in the right direction ends up being the biggest step of your life. Today i felt that i took another one of those steps. I went along to a Fibromyalgia support event with my mum, dad and boyfriend which allowed me to take one positive step in the right direction. The event was not only about finding out ways of dealing with the condition through mindfulness and physiotherapy but, also about meeting others who go through the same daily experiences. These are people that have had it for a number of years and it was really inspiring to find out how they have managed to cope and how many still manage to stay smiling.  

It is very difficult not to focus on the negative moments that you battle each day but, these negative thoughts can then contribute to your overall emotional state and make the pain even harder to work through which i can personally vouch for. One of the main points i took away from listening to the speakers today were that little steps are better than none. As im sure many have you have been told time and time again, exercise can have a positive impact on your life, not just physically but mentally. However, as chronic pain can make exercise difficult and limit what you can do, today we were told to only do as much as you feel able to do and that you don't have to do it all in one go. On a day were you have a flare up or are having a rest day, few key movements such as moving your legs or lifting your arms, depending on what you are comfortable with, can have more benefits than downsides. Many people, myself included, are scared of exercise as they worry that in our conditions, it can do more damage but, as much as we cant gauge how our pain and fatigue will be effected, exercise is proven to improve your mood and well being. 

After months of coming to terms with my condition, pushing myself to hard and beating myself up over not feeling that im doing enough, today has taught me to listen to my body and take one step at a time. My condition isn't going to go away and working towards looking after my body better will be a lot easier than trying to fight against it. It can be very isolating when your body wants to work against you than with you but, knowing that there will always be people there for me on my good days and there to pick me up on my bad puts me in a better mindful position. 

The moment that warmed my heart the most was witnessing the support from my loved ones. They all made the effort to travel out to the event with me, brought merchandise to support the cause and looked after me every step of the way. 

I would love to hear about other peoples experiences whether you are suffering yourself or know someone that does. I would also love to hear from anyone who lives in North West London who has also been diagnosed with Fibromyalgia as i have only spoken to people further afield :)

Have run out of spoons so im forked!

The worst part about chronic pain is the complete unknown. It will always be lingering in the background no matter how your feeling, waiting to turn a relatively good day into a painful one. Nothing in your life is planned because you can feel good today, or maybe even for a week but, then out of nowhere you are back to square one. It’s not just pain. It’s a complete physical, mental and emotional assault on your body.

There are 7 types of pain that are wrapped in the Fibromyalgia box. I felt it was important to break these down into bite sized pieces that people like me could understand as the internet can be full of technical terms and overwhelming information.

 Three of these have a medical definition:

Hyperalgesia: in short this type of pain is described as our brains sending pain signals but at a higher frequency than those without the condition. This causes an abnormally heightened sensitivity to pain.

Allodynia: Allodynia means “other pain”. Imagine the feeling you get when sunburnt. Your skin is painful to even the lightest touch. Now imagine this all of the time.

Painful Paraesthesia: also known as pins and needles is a pricking, burning tingling or numbing sensation which is usually felt in the arms legs, hands and feet. In my case I generally feel this in my feet. Imagine walking over hot burning coals all of the time. This is pretty much how it feels on a regular basis.

The other four are not medically defined but, are just as important:

The Knife in the Voodoo Doll pain: This pain I can describe as an intense stabbing pain that feels like it is going straight through you. 

The Randomly Roving pain: this pain is evidence that the pain from Fibromyalgia is never really concentrated in one place and is pretty random. It can migrate from one area of the body to the other with seemingly no reason

The Sparkler Burns pain: This one is pretty self-explanatory. In my 

experience I get this pain most frequently in my hands. It feels like a 

throbbing piercing pain that only seems to get worse if aggravated and can 

then trigger pain in other parts of the body.

The Rattled Nerves pain:  this pain in my opinion is one of the worst. It is usually a very uncomfortable body ache that can start up in all different places in the body, mine being mostly in my legs and back. This can then be joined by dizziness, nausea and anxiety.  It is said to be caused by stressful situations and can potentially be triggered by loud sounds, flashing lights and large crowds.

I never realised how much I took for granted – working, shopping, socialising – until chronic illness came into my life and these various types of pain became "normal" to me. Nothing has been quite the same since but, I am trying my best to put on a brave face and work with the body I have. I know it’s not going to be an easy journey but, we have to live through the bad days to get to the good ones.

You just have to remember that you were given this life because you are strong enough to live it :)

The only way to get better is to surround yourself with people who believe in you

Yesterday marked a year with my boyfriend and I felt that this would be an ample time to talk about support. This condition can be very isolating and whilst some people will be happy to support others will take it as just another word they don't understand and have no interest in doing so.

Thankfully my family and boyfriend are part of my close knit support network.  They have made an effort to find out more about Fibromyalgia and are trying their best to keep a smile on my face and make me laugh. Without their support I don't know what kind of state of mind I would be in.

I have also started attending a Fibromyalgia support group in Ealing where I have met some lovely people who know exactly what I am going through.  It is inspiring to hear how others are dealing with the condition and to get advice from those who have battled the system to get the support they need.

Sometimes we need someone to simply be there, not to fix anything, or to do anything in particular, but to just let us feel that we are cared for and supported.

My little fibro team may not be big but, I couldn't ask for better people to hold my hand along the way