Wednesday, 11 November 2015

Stress and Strawberry Milkshake

The black hole that appeared around me a few weeks ago just seems to be getting bigger. In my previous post I explained that after much deliberation I felt it time I had to take a step back from working full time and reduce my hours which has actually been accepted now by my employers, however the rigmarole around this seems to be never ending an a ridiculous bunch of policies, procedures and politics. It took nearly two weeks for my request of hours to be dropped due to my struggle with my condition and that is subject to a review from occupational health. 
No that sounds pretty simple right? Wrong. My occupational health review has been confirmed to take place in December. It's only 2nd week of November. I was told that I can only return to work prior to the occupational health review under my existing full time hours contract. My doctors have agreed that I have pushed myself too far and agree that I should only be doing part time right now and I have to agree that I don't think I'm capable of doing full time hours. I feel I'm being pushed into a corner to be honest. To top it off today I received a call stating that because I previously had time off sick this year (following my shoulder replacement I had time off to recover post surgery) I have reached my limit of sick pay for this year and will not be paid for the time off I have had recently. Again, I'm backed into a corner as I now feel I have to return to work for financial reasons rather than actually being ready. I am unsure what to do at the moment, I feel very isolated and my choices are limited. If I remain off work I won't be paid. If I go back I'm not sure how well
I'll cope. I also feel that they haven't fully supported my request for fewer hours but have had to accept due to legal ramifications rather than concern for my health and I now worry about the attitude towards me when I do return to work. It's actually made me very stressed out, at a time where I have been signed off by a doctor anyway and should be resting and I'm receiving calls and emails from work almost daily to update me on my fate. I just have a gut feeling this isn't right. I was then told today, after the call informing me I wasn't being paid for time off, that occupational health will now agree to me returning to work on part time hours until my review only if a doctor states that I am fit to work with these conditions. That has just emphasised the pressure to go back to ensure I have some money coming in but who knows what they will say at this review? Are they trying to get rid of me? I'm starting to fear that I am more of a hindrance than a help and I'm sure that's not right. These feelings are subjective and it could easily be denied that it was my employers intention to cause any stress or worry at a time of ill health. Cherry on the cake is the stress over the past couple of days has triggered yet more illness. I developed a really sore throat and a visit to my GP (again... I swear I should be paying rent there) today confirmed its tonsillitis. I just thought it would be easier than this, that I would be fully supported and encouraged to come back when I am fit and ready and be welcomed by my colleagues in doing so. I don't feel welcomed whatsoever, more like forced back into a team that is only following the rules rather than actually valuing me as an employee. I have worked very hard all my life, been a valued member of every team and I could not feel more worthless at this point. I'm fed up. Sick and tired of being sick and tired more to the point. I always try and be positive in my approach to things but there are some days where I just feel enough is enough and want to hide away until things get better. The best thing about today? A cool strawberry milkshake to soothe my throat which my sister bought me. Life isn't all that bad.

Tuesday, 27 October 2015

Choose Life

I have been struggling a lot for the past few weeks. I don't like to admit it, not even to myself because to me it seems like failure. I have experienced extreme tiredness, aches and pains all over my body, blurred vision and dizzy spells, loss of appetite some days and a few infections. I've been trying very hard to hold it all together and carry on as normal but with each day it just gets harder. The exhaustion is the worst thing, I struggle to concentrate at work, find I cannot get through the day without a nap and just constantly want to lie down.
I've been trying to consider the reasons why this is happening, ive been to the doctor for some tests also. Every day is a challenge at the moment and I am struggling to live my life. I don't feel like doing anything outside of work, it's hard enough to get through the day without collapsing is how I really feel. The thing that keeps coming back to me that I really haven't wanted to face is that maybe I just cannot cope with full time work anymore. I want so desperately to be able to work as normal and be able to do all the other things around work. I want so desperately to not give up and accept that this disease has given me limitations but the longer I try the worse it is becoming. I am becoming anxious, drinking way to much caffeine to combat the tiredness and nothing really works.
I have had to try and make some decisions to benefit my health and my future as its gettin out of control, I just don't feel able to do anything anymore. The only conclusion I can come to is that I need to step back on the working hours I do, so I intend to speak to my employers about the possibility of shorter working hours and working from home a bit more because the long days at the moment are killing me. I honestly didn't want it to come to this, and as I said, I feel like a complete failure for not being able to achieve something so ridiculous like a full day at work but I have to listen to my body now before it starts to ruin my whole life. I think that I could achieve a better work/life balance if I didn't work long hours and suffer for that around it. I don't want to have to go to bed everyday after work, spend every weekend exhausted not in the mood to do anything and be upset every day because I feel like I'm failing and too tired to fight. This is no quality of life.
I'm sharing this with you because I know that some of you may be feeling the same way, battling with yourselves over remaining independant and thinking you are a failure for not being able to work. It's been very important to me to remain independant, and continue working because I didn't want this life. I wanted to achieve so much in my career but I don't know how I am going to do that by pushing myself so far it's detrimental to my health.
Anxious about what my employers will say, I am struggling to sleep also. I really hope that I will get the support that I need and be able to continue with my job but of course I fear the worst. I fear they will think I am not cut out to do the job if I am not there full time. This isn't true, as I work bloody hard and I know I can do a great job whatever hours I do, but there's always that feeling they may not understand and see things in a very black and white way. Either I can do the job I set out to do or not. I have considered this of course, and hope it won't come to it but if it does then I will hopefully find something that is supportive and matches my ability. My career shouldn't have to be affected by my condition in an ideal world but I know many that have had to give up work altogether because their bodies just aren't allowing them the freedom to be employed. I am NOT giving up, I won't. But I just need to make some changes to ensure I can remain in work as long as possible and have the work/life balance I need. I will of course let you know how it goes with my employers and here's hoping I get the result I need to make things a bit easier. I am truly very lucky to have amazing people around me that support me no matter what and that has made all the difference in my battle.
So, I want to leave you with a message I got from my partner today that truly made me feel better about things and I hope it will resonate with some of you who are struggling with decisions about work and life in general...
'You're the bravest person I've ever met, it's one of the (many) reasons I love you so much. You're never beaten. Just go easy on yourself and stop worrying about letting everyone down. Everyone that matters only cares about your quality of life and your health, not your job, what you choose to do with your time or anything else'

Thursday, 8 October 2015

Secret Battles

I’ve been thinking about this post for a while. In fact, probably since the day I was diagnosed, I have wanted to share these thoughts with you. If you read my posts regularly then you’re probably aware that I tend to focus on the frustrations of living with RA and trying to make my negative experiences into positive ones. However, I feel the need to share this post in support of all the people who suffer with long term illness, be it RA or something else you know you will be carrying with you for your entire life.
Now, many who know me will agree that I am not the most tactful of people when it comes to saying the right thing. I am not gifted, like some I know, in being able to always say something constructive or make others feel better no matter what the situation. We’ve all been there, where a friend or loved one has just shared some bad news or is having a rough time for whatever reason. There comes this wave of pressure over you prompting you to say something that will take the pain away. The truth is, there isn’t really anything one can say to make it all better. The only thing one can do is offer their support and comfort and the most comforting thing in times of need is just knowing someone is there for you.
However, throughout the past few years living with RA, I have noticed a few less than comforting questions or responses that can really be frustrating, and even upsetting. I don’t expect the world to know what I am going through, or the ins and outs of my disease. I would like to think that when I was diagnosed and shared the news with my loved ones that they perhaps wanted to do their own research into my disease to get a sense of what I am dealing with, if they didn’t feel comfortable asking me personally, I mean. I have nothing to hide from my friends and family, and I am even happy to share my experiences with those I don’t know if it means providing a little comfort to someone. What is frustrating is having to explain yourself every time you feel a bit rough or down and having to teach others again and again about what RA means. Living with RA is hard, very hard. There is so much physical and emotional pain to deal with every single day. It doesn't go away. It's considered in everything you do and, as such, life choices are very difficult and much more complex.
I am not sure if this is down to the whole ‘you don’t look sick’ fiasco, where because you look reasonably normal or healthy everyone presumes you have been cured and are then confused or skeptical if you mention you are not well the following day. The upsetting thing is feeling like people don't believe you. If you knew the smallest amount about RA then you would know it doesn’t discriminate. It doesn’t plan out its reign of terror according to your calendar. It doesn’t intentionally set out to mean you can’t attend a special event or hang out with friends (although sometimes I do wonder about this…). RA is unpredictable. One day you can feel OK and cope very well with little pain and just a few hours later you may experience crippling pain and have a knee the size of your head (true story for me this week). It just happens. I am sure I have said this over and over again but I wonder if anyone is listening sometimes when I am faced with the same old questions.

Here’s just one example…
I tell someone ‘I’m having a bit of a flare up and struggling at the mo’
Responses… ‘Oh,  how come?’ ‘What’s brought that on?’

Well, if I knew that then I’d be a rich woman and I would know how to prevent flares wouldn't I? As above, RA just does. I don’t know why it happens, I don’t do anything to ‘bring it on’ and to be honest I don’t know how to respond to this question without wanting to scream or cry sometimes. The solution to this could be to talk with your loved ones and explain that questions of this type are frustrating and upsetting to you. Explain that as someone battling a crippling disease every waking minute of every day it’s only adding to the fight when you feel those you love most just don’t understand, and more importantly don’t seem to want to understand. A quick Internet search will share with you the basics of RA in just a few minutes and explain to you even a little of what living with RA means. I know for certain that if a loved one came to me and, God forbid, shared news of a diagnosis I knew nothing about, the first thing I would do is try and find out about it to help my understanding and be more confident in talking to my friend about it.
Get well soon. Another well intended wish from a loved one that can come as a huge blow to someone who has a long term condition. Whist well intentioned and a lovely gesture to bestow on someone, it’s simply not going to happen to someone with an auto immune disease, and many other diseases. You won’t get well soon, you will never be ‘well’ as such, there are just good days and bad. It may seem pedantic but It’s so important to someone who is living with this fight every day that they feel comforted by those they love, that they feel a level of mutual understanding. The same applies if a friend is having a problem, whatever it may be. I am sure they would want you to comfort them in their time of need and not have to explain the ins and outs of ‘why’ something has happened. Does it really matter how or why something has happened? Surely the point is how that something has made you feel and what support you need to get through it. Most of the time a simple, ‘I am here for you’ is all you need, and I am luckily to get this response more often than not from my loved ones which is of great comfort to me.
If I can share one piece of advice to anyone reading this it’s to develop an understanding of your loved ones lives. This goes for anything, whether it be to find out a little more about the job they do, or perhaps they have a family member who is sick and it would help them to talk about it? Perhaps they want a child and are struggling to conceive? Or perhaps they have a medical condition you know nothing about? We’d all be a little bit closer and have more respect for each other if people were more this way inclined. I vow to take my own advice here and hope to find out a little more about the people in my life and their secret battles.