So, mentally and physically I've not been doing too well recently. The weather has increased the pain I'm in, as has the housework i've been doing - I cleared a room, rmoved a carpet, laid a new carpet, then bought and built furniture to turn it into a craft room. The pain has stopped me from doing things I might otherwise have done and the house is in a bit of a state, and my weight has stopped decreasing because I've been unable to exercise. My legs hurt and all I want to do is sleep because my vitamin D is so very low, and the supplements seem to have stopped working. The awful weather stopped me from going to see my parents for a few days there, and I'd really been looking forward to that, so I ended up sitting in and watching TV as usual.

I've also been incredibly anxious about my PIP assessment that happened this morning, with much too much crying, stress eating of junk, not sleeping, over sleeping, biting my nails, and general anxiousness. This hasn't been helped by 2 phonecalls, a letter, a text, and an email from the assessors over the last week, each time reminding me they were coming today and sending me into a bit of a spiral of stress. I've now to wait for 6 weeks to find out what will have been said about me and the decision they will make based on today, so who knows what's going to happen. I've absolutely no idea if I said or did enough to get the point across that I'm not well and need the financial help. Because right now, all that's going through my head are all the things I should have said but didn't, because I either didn't think of them or it didn't fit with the questions asked, so I didn't volunteer extra info thinking it might come up later. So I'm kicking myself and berating myself, and having a wee stresshead party right now.

It was only afterwards that I thought about it too, and realised that not one person had wished me luck today. My parents knew, my friends knew, people on here knew, but radio silence. No wishes of luck, and I'm just guessing, but I;m going to say that no-one will get in touch later to see how it went either. Makes me feel really important to others and loved, all this concern, interest, and care I'm shown....... It's not really any wonder that tears are never too far away just now.

Then we've got where else my brain has been going recently. With the pain, and the stress of the assessment, it's got me thinking. I'm incurable, the sort of incurable where the doctors think and hope that old age will get me before anything cancer related - my current cancers at least. Now, I'm only in my 30's which means I could have a good 40 years or more of life left....... and the reason this is a blog post rather than a forum post is coming up...... I can't imagine living like this for another 40 odd years. This pain. The constant PIP assessments. The tiredness. The loneliness. Just everything. Sometimes, I look at people who are given a time limit and I feel jealous because their pain and exhaustion will be over soon, and their friends and family won't drift away and not care about them, because they don't have long left and will want to spend as much time together as possible.

Yes, I know how that sounds, and yes I know those people who haven't much time left would probably do just about anything for more of it and will see me as being selfish and who knows what else. But it's just where my mind has been lately because this has been a particularly tough couple of months. I've absolutely no idea if anyone else feels the same, but here it is, my confession. If I can let it out, then so can you.

What's your truth?

Anonymous
  • <p>Hey Lass,</p> <p>I&#39;m so sorry you are feeling like this, as I&#39;m sure you know I&#39;ve only joined this forum a few weeks ago and you have shown me nothing but help, kindness and support during such a stressful time. My inbox is always open, please reach out if you ever need to. Today I sat and read all about you on the little info box and wow! Just wow! You are a far stronger women than me. You have been through so much already and I actually don&#39;t know how you are even baking cakes! Please take each day as it comes and realise how awesome you are to have gone through the pass few years. Massive hugs and I hope your pip application is successful xx</p>
  • <p>Dear</p> <p>please don&rsquo;t feel guilty for feeling the way you do about your current situation, we can only play the cards we are are dealt in life. In my disease the age of onset can range from 30 to 70 years old and this makes a big difference in the stresses and strains it places on an individual. Trying to get the benefit system to recognise the challenges of living with a chronic illness like yours is a very stressful as I&rsquo;m sure there is a lack of understanding of how difficult it is to predict how it will effect your life on a day to day basis. As for the lack of support from some of the people in your life, unfortunately there is a tendency for people to think as long as your cancer isn&rsquo;t going to kill you then what&rsquo;s the problem ! But we all know that life isn&rsquo;t as simple as that and we all need support to help us through episodes of stress associated with a ongoing illness. So hang on in there, lean on your friends here in the forum who won&rsquo;t judge you no matter what .<a href="/cfs-file/__key/commentfiles/f7d226abd59f475c9d224a79e3f0ec07-69480836-8f43-45b2-bde9-18a924fe5919/AE1509AD_2D00_89B2_2D00_4696_2D00_8029_2D00_304ED049D188.jpeg"><img src="/resized-image/__size/640x480/__key/commentfiles/f7d226abd59f475c9d224a79e3f0ec07-69480836-8f43-45b2-bde9-18a924fe5919/AE1509AD_2D00_89B2_2D00_4696_2D00_8029_2D00_304ED049D188.jpeg" alt=" " /></a></p>
  • <p></p> <p>I&#39;m sorry.&nbsp;</p> <p>We&#39;d talked about it and you&#39;ve been constantly in my thoughts. No excuses, I let you down on the day, the day that counted.</p> <p>It&#39;s good lesson. I&#39;ve been feeling that my recent hospital admission, disease progression and decision to give up work have gone largely unnoticed amongst some of my friend and family. It&#39;s no longer news. A couple of them have said, &#39;I thought the cancer had already spread to your lungs&#39;.... so of all people I should have been the one to send that text message.</p> <p>My feelings about what you&#39;re being put through are not printable.</p> <p>I certainly understand that another 40 years in your shoes is unimaginable and it&#39;s not selfish to so.</p> <p> and &nbsp;said it all.</p> <p>xx</p>
  • <p>Hi ,</p> <p>So sorry you are feeling so despairing, and that you felt you couldnt post on a forum. I have replied to your posts in the past about the horrible nature of PIP/ESA assessment. Sorry no one around you has asked about it, I think people just dont get how terrible and demeaning the process is and just assume it is a routine thing. People have buried their heads in the sand about what is happening to people who need to claim benefits.</p> <p>Your despair about how you feel and not wanting this to continue into the future is completely understandable, given how young you are. But I also know that your signature is one about hope, and I believe hope will carry you through, and that things can change and we have no way of knowing what is coming round the corner, including better treatments, and just the totally unexpected. You feel like crap now, acknowledge it, dont be guilty about it, let the rage out in any safe place. But I believe you will find a way to carry on. XXX &nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;</p>
  • <p>Hey xx&nbsp;</p> <p>I just read that and teared up xxx I know how you feel. It&#39;s an anxious dark hole that&#39;s easy to get in xxxx I spent weeks sleeping because it was easier than being awake xxx&nbsp;</p> <p>Always here to talk and it will get better and stay up xxxxx</p>