On the road to recovery Part 2: Stepping into the unknown
There are so many sufferers of ME/CFS/Long Covid who are trying their best to hold down their full-time or part-time job. Some are parents, struggling to manage their illness alongside trying to be there for their kids. There are many fears involved when thinking of taking a step back from work/ life to get treatment. The fear of how to pay the bills, the fear of giving in to the illness and it getting worse, the fear that you lose that bit of control that you feel you have over the situation, in continuing to push past the difficulties and get things done. I can look back now and see the path I have travelled, and it might be easy to say, ‘it's ok, you got treatment, you got support’, but at the time, like many things in life, I didn’t have a clue any of that was going to happen. I didn’t know the problems I was facing would be ok. I just saw, like many do when faced with seemingly insurmountable obstacles, that I was on the wrong side of the problem and I didn’t have all the answers.
I was recovering from the second virus and though I tried to go back to work it didn’t take long to realise, while attempting to get a trailer unloaded at the yard, that I was not ok. When you have this illness, you feel aching exhaustion that is bone deep. The more you push to get anything done, the worse it gets. I was in pieces. I needed to unstrap the load that was currently on my trailer, left over from someone else using it. Normally, the trailer would have been empty already. I would have connected to it and got down the road, not returning till later that week. I honestly believe God knew I wouldn’t get that far. I was breathless and weak and close to tears. The delay was fortuitous in the end because if I had driven off to my collection with the empty trailer as planned, I would have been in a right mess, with the added problem of needing to get back. By the time the trailer was unloaded, I ended up going into the office and letting them know that it was no good. I had to go home. A few days later I decided to leave my job. In normal situations, this would be just a matter of sick leave, however, there is no sick leave in the HGV industry. People are eligible to claim benefits from the government (£90per week statutory sick pay) but the transport industry tend to cancel a drivers’ contract on the understanding that they can come back and get their job should they want it when they are better. I had met this problem before, so I had insurance in place to help with the loss of earnings. I bit the bullet and gave myself the time. I was under the impression that it would be for a couple of months, thinking that when I was ill like this last time (December 2021) it took 3 months. I had already had a holiday booked so thought that it would be just the ticket I needed. I was long overdue some rest, but little did I know quite how much my body was suffering.
The first problem came to light when the company I had taken
the insurance out with decided they were not going to pay up. This was my first
hard lesson in the realities of pre-existing health conditions. Those who have
attempted insurance claims will know what this is like. Looking back, I think I
was too exhausted to emotionally react much to the situation. I knew the
problem needed solving and Id had dealt with the benefits system in the UK
enough in my past to know how to get the ball rolling. My mantra being ‘take it
a step at a time’, in between so many naps you would not believe. I could nap
for England!
The time frame began to grow. I left work at the start of
April. It took till late May to get the decision from the insurance company. It
took another month to get the basic benefit support in place. That lands us in
late June. I originally planned not to be out of work for long, so I was hoping
and researching options to return to work, searching for a company that did
some version of part-time driving jobs. I thought that I would be able to
bounce back, mind over matter, like I did back in 2021, but as you know, that
didn’t happen. I was being offered driving work which, in a different situation
would have been my dream! Companies were crying out for good drivers, and I’d
shown myself to be just that. There was just no getting away from the fact that
I was still struggling to recover. The more I tried to get back on my feet, the
worse it got. That’s when I was introduced to The Perrin Clinic. I realised
that I needed to stop pushing. I needed to 'down tools' long-term. If I didn’t, I
would be in real trouble. This was not simply burnout. This was ME/CFS.
The journey was only just beginning. Life was about to look very different. Disability support applications were now imperative because my savings had run out, and the treatment was set to take 2 years. I had a team of people supporting me that I am forever grateful to. I wanted to take a moment, before continuing my story, to mention a few of them:
Thanks to my Dad, who gladly footed the bill for my Perrin
Treatment so I could get the help I needed from the outset.
Thanks to my church family, who helped pay my bills when
the benefit waiting game just kept dragging on.
Thanks to my friend Nat, who knew how to write those
disability support applications, having written countless similar forms herself.
Nat celebrated with me, spat feathers with me, and reminded me to give myself
mental recovery time from the headspace needed to write out those forms.
In recent months, there has been a fresh wave of speculation about what support will be available for people in my situation in the years to come. The government are changing elements of the benefit system and have said they intend to overhaul a lot of what currently is being offered. I have had to make a point of not listening to the media as they speculate what these changes will look like and who is likely to be hit the hardest. There are a lot of people in similar situations to mine, being tied in knots with anxiety because it is tough enough to get these applications accepted, without fears of more obstacles being put in the way. I can not speak much about this. It is simply a waiting game to see what the changes look like when they are implemented. I can only offer my experience, and that is to say that no matter what errors, pitfalls, hurdles, and frustrations the DWP kept throwing my way, my God was ready for them; He had gone before. It is horrid to be in a position where you don’t have control and you are forced to cut finances back to minimums. There are resources out there, though, I urge those who need it, to ask for help. My local council had a hardship fund which meant they could chip in to help pay my water rates and fuel bills and gave me food vouchers for Aldi. Food banks are also available as well as countless charities that walk alongside people to help them apply for support or signpost people to where they need to go. If this is you, you don’t need to do this alone.
Part three coming soon
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Resources (click to access):
Cost of Living Support: local council funding pots
Christians Against Poverty: Benefits Calculator
Dr Raymond Perrin: The Perrin Technique
Benenden Healthcare: A safeguard against NHS waiting list times
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