Hi I'm Ade I'm 40, I've joined this group for no reason other than looking for advice or to let off steam. It's a long story that I will try and keep short but so much has gone on!!
Early December I went to the docs with mouth ulcers that I'd had for 3 months and wouldn't go away, i felt fine apart from that... Next thing Is I'm diagnosed with Chronic Myeloid Leukemia and having treatment with chemo in tablet form.. I was told I can live a relatively normal life apparently, that was according to my consultant and other sufferers....
I'm self employed and was signed off work on sick.. I then walked into the job centre for the first time in my life asking for help as I didn't know what to do or where to turn..
I applied for universal credit, did everything I was told but being new to it and not understanding it fully, 3 weeks later it was cancelled as I made a mistake in my application by not accepting some terms and conditions. (Basically I didn't tick a box!) I then had to start again and my first claim was thrown out. Financially I've had this burden over me with no income for 2 months and still waiting for 1st payment (which from what I've learned will barely cover the basic bills)...
I then went into my housing association who I rent off and they sent someone out to see me (money matters?), i explained everything and she seemed helpful but 2 weeks later I haven't heard from them like they said I would and feel let down by them aswell now...
I have a consultant at the hospital who is basically pretty unsympathetic and uninterested when I speak to them.. I have a good pain thresh hold but i get this pain in my legs that is excruitating to the point i can barely walk, cant sleep and I generally feel pretty ill 24/7. I have no interest in getting off the sofa and am watching my business I built up go down the pan!!
I actually feel if this is how my life is going to be I'd rather end it tomorrow, I actually mean that..
It's no life, my consultant talks to me like it's no big deal, he sees it everyday..... I get fed up of people asking how I am like I feel they need to ask and then always being told that I look pale! (Gee thanks)
It actually makes me feel selfish that their are alot of people worse of than me and I'm moaning like this..
I have severe anxiety issues that I have had for 20 years plus, I had a psychological assessment around 3 years ago which diagnosed me as having complex PTSD stemming from an abusive childhood.. Basically means I've witnessed alot of traumatic events over a long period.
I don't take meds I deal with it in my own way, managed it and felt I dealt with it ok, but I know my way of thinking isn't the same as most people hence why I might be a bit erratic with my story..
I've always been strong and dealt with things my own way, never relied on anyone but I actually feel alone right now. When I've tried to seek help, it feels a waste of time and no one is interested, and with everything being a struggle I've got to the point of thinking "why bother saying anything".
Everything seems to be going down hill and when I ask for advice or help I feel I'm being let down... filling in endless forms seems a waste of time, at the job centre I was buying a printer, attending interviews, doing everything I asked and was still let down for making a simple mistake, I got sent a PIP form the other day but I've heard that if I can touch my toes or wipe my backside it is pointless applying with this condition so it went in the bin.
I don't know what I'm looking for tbh by telling my story....but I can't seem to find answers or support anywhere that i can say has actually helped me..
It's not the money, I will do what I need to to keep a roof over my head, forcing myself back to work before I'm ready if need be... it's the misery, feeling ill, I feel my life is over and I'm just existing... 6 months ago things were really good... I'm not exaggerating but I actually feel like I'm slowly wasting away, things will never be good again and it will slowly get worse as the years go by.. I just want my life back, a normal life will do, I don't ask for much or expect much... I can't even have a night out with friends anymore..
Even when I read over what I've typed it doesn't sound like me, it's crazy reading it back to myself.. I've just got no fight anymore, their seems no fix to anything.
Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear the challenges your CML diagnosis has brought.
A cancer diagnosis can indeed bring a lot of stress, confusion and many many questions but talking with people who are on the same journey can help a lot.
As has been said a blood cancer like CML is very treatable but it’s everything around this that can be a challenge.
Can I first direct you to this link to our Chronic myeloid leukaemia group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.
Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group.
Being Self Employed (I am also Self Employed) and dealing with the benefits system is very stressful and challenging.
You do need some professional help to get you through this. As you have found, a little mistake can knock your applications way back.
So can i start with highlighting our various Macmillan Support Line Services call them on 0808 808 00 00
This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
Talking to people face to face can help a lot when navigating the benefits system so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre.
Also check for your local CAB office https://www.citizensadvice.org.uk
This is basic benefits and other financial support information.
I have been in this journey for 20 years and it does get more controllable once you find the best way to navigate everything that comes at you.
Always around to chat.
