Only Time will Tell  – Chronic Illness Challenge, Day 19.

How do you feel about the future? 

Well, that’s a tough and rather depressing question. Erm… yeah…. *deep breath* i’ll give it a try, here goes. 

When I look into the future, despite the positive attitude that I try and hold onto, to be honest it’s pretty bleak.

I spend my entire life fighting against the system, the medical system, the benefits system, the government. Most of the issues I face within these systems are caused by the government. My political views aside I will only talk about my experiences and what they mean to my family and our future.

Medical care. With the Illness that affects me the most being invisible, not easily diagnosed and untreatable it has literally always been a fight. ME has been recognised as a neurological condition since the 1960’s and has its own NICE guidelines within the NHS. Despite this there are STILL many medical professionals that do not believe in its exisitance, or believe that it is not medical condition and that it is psychological instead. This makes finding a correct diagnosis and any treatment an uphill fight, all the time. It took 3 years to be diagnosed from the time that I realised my symptoms where not disappearing or improving. Even now I still have a list of doctors who I will not see and one who has actually told me directly that she does not believe in the existence of ME. I STILL have doctors and other healthcare professionals recommending GET (graded exercise therapy) to me, which I previously tried and which caused a massive and rapid decline in my physical ability, it has since become apparent that it is not a suitable treatment for severely affected ME patients. 

However over time the medical profession has become increasingly understanding, there are still many, many disbelieving professionals out there but substantially less than when I first got sick. Hopefully this will continue for the future. 

Over the time that I have been unwell I have noticed so many problems and issues within the NHS and social care. There has been a rapid decline in available treatment and support in the past 6-7 years. It’s been worse lately, I believe this to be linked to the reduction in funding for councils, as they fall the level of social care available falls. As this drops the ability to discharge patients dependant upon home care from hospital becomes almost impossible, this bed blocks hospitals and puts staff and resources under incredible strain. It delays people from receiving necessary but elective treatment and operations, which can lead to worsening condition, further complications and require more extensive, costly treatment. The NHS is indeed in crisis, but it is a crisis of the governments making. I think most people would take a small tax increase to be able have easier access to better care. 

There’s always hope though, in Austrialia they are taking ME and research into its cause a lot more seriously. There have been studies finding causes and possible causes, hopefully this will eventually lead to a diagnostic test and treatment, and, in turn more recognition for sufferers from the medical profession. Hopefully the government will realise they’re mistakes or bow to public pressure and put money into councils and the NHS even if it does mean a slight tax increase. The NHS should be about people and not about profit, that is, afterall, why it was developed in the first place. We really do struggle financially but even we, who already find it hard to make ends meet would pay extra tax to know that our loved ones would be cared for. 

Speaking of our financial struggle, a lot of it is also caused by the benefits system. Both myself and Chris work. We are not (and will always try our best to remain this way) dependant open benefits. That said, due to my health my ability to work is serverly compromised, the job I have is also only temporary (3 years) as is Chris’s ability to work overtime due to my care needs. Thus we are viewed as a low income family. We get help to pay rent through housing benefit, although we pay the majority of it ourselves. Due to being low income we also receive tax credits. I am so, so grateful that we have a welfare system that is there to help us. It does keep us housed and out of poverty and that is amazing. The problems in the system are things like people falling through gaps in the system and that when there is any change to your income (even a possible change) benefits are stopped or suspended with little or no warning or explanation. This needs to stop. 

Our tax credits were recently reduced (without either warning or explanation) from £63 a week all the way down to £5 a week. This is an incredible drop, and we have yet to find out why. We use this money to pay our council tax and internet bill amoungust other things. We cannot plan, rebudget etc if we are unaware a change is going to take place. Also we don’t believe it to be correct and neither does the CAB. Our housing benefit is adjusted around it so that has changed also, although that has increased we are now worried about being overpayed by them, but still needing to use any extra to put towards bills. Along with the CAB we are slowly piecing together what on earth has happened, and why none of the figures (from either the HMRC or local council) add up within themselves, each other or relate in any way to the money we are receiving. The benefits system does need to change, to stop people falling through the net, to make sure everyone that needs help gets it. People need to be encouraged to work but people’s occasional inability to do so also needs to be recognised without as much of a fight. When benefits change we need to be forewarned and have correct explanations where the figures all add up right, not miles different in every letter, and different again in the amount we actually receive. So people are not left in the lurch, unable to afford to pay their rent, or essential bills, such as council tax. Since the change in my tax credits I have been almost unable to sleep, waking up mid-way through anxiety attacks due to worry about how on earth we are going to get through the week, never mind the month. Of course, this has a huge impact on my physical health and abilities leaving me less able to actively do anything about it. 

Positives on this is that we do have a welfare state. That we do have help, that we have a roof over our heads. That somehow we do, every month, find a way to make ends meet, however hard it is. Also that we have such loving friends and family, who would do anything to help us. My mum and dad help us to pay our rent and buy bits here and there for us when they need them. Chris’s parents help with Chris’s travel costs and are currently paying for him to learn to drive, which should give him more job opportunities. I also have some amazing friends, their support is invaluable, emotionally, mentally and some wonderful friends have even helped us financially, without us asking. Recently one friend sent me some money into my Paypal account, this has relieved a huge chunk of my anxiety as it allows me to pay our council tax bill this month, and gives us more time to sort out what on earth is going on. You know who you are, and, if you’re reading this we are so thankful and we all love you. 

So at the moment that is what my future looks like, at least it is all that I can see, because it has been what the last 6 years has been like, sometimes it’s harder to see further than what is right in front of you. 

I try hard not to think too much about the future, as no one knows what it will bring. Maybe my Illness will finally get the recognition and further research they need, maybe they will find a diagnostic test or a medical treatment that will help and show medical professionals it is a condition not a choice. Maybe the benefit system will become more stable and reliable, with advanced warning and explanation of changes. Hopefully one day we will get to the point where we will not need to receive any at all. Hopefully the government will increase funding for local councils and social care will become more effective, maybe this would allow Chris to do overtime and get promoted, dad to have to spend less time around me and get on with being retired and maybe, just maybe, it will save Wildchild from having to feel like she is caring for me. 

But all I can see is more of the same instability, more of the same fight and more of the same struggle in our future. So for now I’m going to focus on the here and now, each day as it comes. I’m going to look to my friends, my family and most importantly wild child and as long as we have each other, I know we can make it through.


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