Struggling

In the last couple of months I have written a lot of stuff down, unfortunately I haven’t been able to finish more than a few of the different pieces.

It all starts off fine:

  • Theme – ok
  • Title – ok
  • Lots of ideas – ok
  • Start writing – ok

Then:

  • Not happy with what I’m writing
  • Questioning the subject
  • Questioning  why I’m even writing

I know there are a lot of things going on in my life right now, and there are many changes happening some are really big ones to me and  some are extremely stressful.

My moods are also up and down at the moment, not extreme swings but enough for me to notice. Being able to concentration for any length of time has gone out the window, and my depression my physical health, are also not playing fair.

One big issue I’m  having, is that my coping and distraction techniques are not working too well at the moment, such as reading, writing, photography and music. My archery does help whilst I am shooting but once I’ve finished shooting, the worries and stresses return.

I’m sure that once things settle down and I get some structure and normality back into my life things will start returning to normal.

Take care

Gary x

Changing, it’s not so easy, sometimes,

Change affects everybody differently, some people thrive on change, and some actually crave it, there are those who are ok with it, as long as it doesn’t happen too quickly, but there are some who will fight change tooth and nail.

For me, well, I’m pretty sure I have been all of these types at various stages in my life, but now I am going through all of these changes at the same time.

Some are happening too quickly as with my physical and mental health so I am finding that to be challenging.

Some things are going too slowly, like mastering the wheelchair and not being too embarrassed to ask for help or to accept it when it’s offered. This will change.

Finally, and this is a very difficult change for me, as I don’t want to be dealing with the department of work & pensions, because of how worthless they make me feel each time I deal with them. I need to find a new coping mechanism for this one

Today I’m in a lot of pain, and that’s my fault, It’s because I overdid things yesterday, I tried to do everything myself, I forget that I’m still getting used to using a wheelchair, and I guess asking for help in getting around is all part of learning to use one.

I know I need more help, a lot more help, and the last two months have shown that to me, only I haven’t been listening, to myself or to anyone else. I’ve been burying my head in the sand convincing myself that I need to find all of my physical limits, all at once.

With all my physical health changes and challenges I’ve been going through, I completely ignored the build-up of stress that these changes were causing, and on top of that, the stress and anxiety being caused by having to stop working, as well as having to deal with the welfare system on top of everything.

I need to calm down and sit down and do some planning. I need to think through what my next steps are going to be and think about how my priorities have changed. I will have to consider want I want to happen for the future, and how I’m going to get there.

One of the biggest things I’ll need to focus on is my finances if I don’t get help from the social, and that is a strong possibility. and if that happens I will need to have planned for how I will get an income. My Motability car will have to go, as without a job I can”t afford to run it, and driving is really painful for me at the moment, so that is something I need to look into as well, see if there is something out there that could help, maybe a medical aid or something similar

I guess I know what I have to be doing over the next few weeks. I just need to get my arse into gear and start doing it.

No more

Unknown

Take care

Gary x

 

What is the point of paying into a welfare system.

Warning this article may contain a swear word or two, Well that’s 3 hours of my life I’ll never get back.

I knew today was going to be bloody awful.

Firstly there is no nearby disabled parking for those attending the Horsham jobcentre, actually there is no nearby parking at all that I know of.

So for those of you that live locally, I had to park in the Swan Walk multi storey car park, not ideal, as it took me 30 minutes to propel myself in my wheelchair to said jobcentre.

I still managed to arrive 20 mins early.

On arrival I was faced with two bloody great sets of fire doors, and after watching me struggle with my chair and the door, a security guard walked over and held the door open.

Here’s a little twist though, the pavement slopes down slightly towards the first door, which when opened revealed a low step, I found  this ot when I was almost tipped out of my chair, watched by the security guard, no offer of assistance and no warning of the step. Happy days.

I was left to get through the second door myself. I was then checked in for my appointment and told to got to the waiting area. I was an absolute wreck, I was exhausted, and in so much pain I just wanted to swear and ask for a ketamine injection, well it worked for me the last time I was in hospital.

After waiting for around 10 minutes, I was called over to the interviewer, I handed over all of the forms I’d been told to bring, they were then scanned I to the system and handed back.

Next I was told I would have to sign a contract, to basically do what they tell me to do.

This is how the contract goes.

If I am late in attending a meeting with my soon to be appointed work coach, I will be sanctioned. If I miss an appointment, I will be sanctioned plus fined £10.40 per day until I attend the rescheduled appointment. If I phone them to say I cannot make an appointment for whatever reason, even a hospital visit, they can choose to sanction me. Finally if I get a total of 3 sanctions all benefits will be stopped.

So the first 15 minutes were all about what they would do to me. What they could do for me was not even discussed, for the last five minutes of the meeting, he told me it would take around 10 days for a decision to be made, by somebody I’ve never met, on whether I get any money or not.

I will also have to go through a work capability assessment, but he couldn’t tell me when that would happen either.

So today comprised of travelling to and from Horsham by car 1hr 20mins.

Wheeling myself to and from the jobcentre in my wheel chair 50mins.

A 20min interview, not the 1hr to 1hr 20 mins I  was told

30mins of waiting and resting.

So if as they say, a country is judged on how it looks after it’s most vulnerable citizens, the UK has failed on an epic scale. These are sad times that we live in.

Below is a picture of my daily journal entry from yesterday, what I wrote pretty much sums up how I feel after what happened today.

20190815_1806186789575835650364237.jpg

Take care

Gary x

Thinking

So I’ve  been thinking a bit about where my life is headed. I’m really excited and looking forward to starting archery, as a new hobby. I’m also enjoying my writing and blogging  as well. But I can’t stop feeling that something is missing, that something is not quite right. I just can’t put my finger on what it is, and it’s driving me mad not knowing.

All in all I really had a good day today. Went out for lunch to a place called Wagamamas, met up with friends, great food, great restaurant, had a laugh and a chat. Celebrated a birthday. Getting more comfortable and confident in using my wheelchair.

Hot weather is not helping, pain levels are driving me up the wall, especially my back and neck,  not sleeping great, feeling a little down, a little depressed, a bit flat, a bit confused, which takes me full circle back to feeling like something is missing.

This requires further investigation,  just not tonight

Take care

Gary x

Pain

You know what pain is a bloody pain, for me, over the last week/week & a balf I have been struggling with writing my blog, due to a sudden rise in pain, in certain parts of my  body, mainly my hands/fingers, chest/left shoulder, neck/throat. Which has made it very hard for me to focus and concentrate. Worst of all is the fact that it has affected my ability to read or write for any length of time. I’ve pretty much used every technique I  know for dealing with my pain, but with little success.

Medication, doesn’t work, and the physio has told me there is very little they can do to help either. Even resting has had little to no effect.

On the bright side though I still I have my dog, my garden, my music and the sunshine to keep my spirits up. My family are looking after me as best they can, whilst  y pain has turned me into a pain which helps a lot, and tomorrow I will actually be able to get out of the house and enjoy a bit of socialising with cffee and friends. So it’s not all bad, is it?

All the best for now.

Be careful out there in the sun and heat, plenty of water and shade.

Till next time, take care

Gary x

Not Good

Not the best of weekends,  on top of my ever present widespread pain and fatigue, I woke up this morning with the beginnings  of a throat/chest infection, so pain and fatigue has ratcheted up.

Also this morning, my final pay packet dropped onto the doormat reminding me that I only have 18 days to go before I  become unemployed, I’ve accepted and understand that I  am now too sick to work. There are and never will be any bad feelings, as the last 2 years have been brilliant.

There is always a good chance of not being able to work again as in being employed and that makes me sad, but I’ve been making plans and have been looking into getting set up as self employed, so I’m feeling pretty positive about that.

I will miss the daily routine of my current job that I love, and the daily contact with my amazing colleagues. I know I’ll still get to meet up with them from time to time for coffee and a chat, and I know  I can contact them anytime I want.I will also be looking forward to being able to help out by volunteering from time to time when I am feeling well enough.

Finally this afternoon I have my first meeting with the physiotherapist, I’ve really been looking forward to this meeting as its been a long wait and I’m positive I will learn something I can use that will help me in some way, just wish I wasn’t feeling so crappy.

Take care

Gary x

Forgetting

As someone who lives with several long term health condition’s, I  think I’m qualified to speak on the subject of forgetting.

I’m so lucky to have such a great network of family and friends, who look out for me and look after me. Making sure I rest enough, eat right, drive me around, phone me up, message me, text me, Facebook me, take me out for coffee and a chat, the list of things people do for me is endless. They don’t do it because they want anything in return, they do it because they want to, because they like me or they love me or maybe it’s because they are just made that way,  caring, compassionate, nice people.

One thing I know I’m guilty of at the moment, is forgetting about the needs and the health of those who give up there time for me, and that time is one of the most precious gifts someone can give.

At the moment somebody I know, someone who puts so much of her time and effort into looking out for and helping others. A person who never asks for anything in return, who wears her heart on her sleeve, and is compassionate beyond words, has been struggling  herself. Now I realise if I look back over the last few months, I can see that I missed a lot of the signs that things weren’t quite right, and did nothing because I’ve been so wrapped up with me, I’m not trying to make an excuse. What  I’m trying to say is I’m not sure when I stopped, but I really need to start looking out for those who look out for me.

The person I am referring to is one of the nicest, hard working, considerate, unselfish,  funny, amazing human beings I have ever had the pleasure to know, second only to my beautiful  wife.

I’m sure this lady knows I am writing about her, I hope you don’t find all this embarrassing, I  just wanted to write down what I’m thinking and feeling today. I know I  can be a bit dense at times, but I genuinely worry and care about those who help me.

I hope you feel better soon, make sure you take all the time you need and all the sunshine you need to get back to being you. Enjoy your time off as much as you possibly can, you’ve done so much to help me over the last few years, without me ever having to ask, I  know you have a great family and friends around you, but please let me know if there is ever anything I can do to help you.

“Work to live, don’t live to work”

Take care

Gary x

 

Pain

Sometimes I wonder how in the hell can my pain levels increase any more but they do, I never know how long these periods will last, could be hours, days or even weeks, and so far this episode is 3 days in and counting. It actually reached the point last  night,  I  was wishing that if  having your legs amputated was an option I would go take it.

I’m not making light of amputation or making a joke of it, I  have seriously thought of talking to my specialist about it, as I have heard of people having this done, though I believe it is very much a last resort. For me at the moment the doctor’s have gone as far as they can down the medication pain relief and nothing has even come close.

The pain in my legs has been pretty much 24 x 7 for the last 8 years and steadily getting worse, but at times like these I just feel like I’m going out of my mind. The pain just takes over and blocks everything else out, it makes it almost impossible for me to concentrate on anything, do anything, or even think straight. It’s taken so many tries just to write this.

It’s  also at times like this I  have to try and convince myself that maybe there will be a medical  breakthrough around the corner, it’s  a real battle to remain positive  during these times, but it still doesn’t stop the real dark thoughts creeping in at times.

Going crazy, but not quite there yet, take care,

Gary x

Thursday 13th June​ 2019

A date I will always remember, and It was probably the nicest way for anybody to lose their job, and for me nice is good.

I’d known the day was coming since the middle of May. Since the day of the last visit to the hospital pain clinic, when the treatment they tried failed in helping to reduce my pain. It was nobody’s fault, the treatment just didn’t work for me.

At that point, I knew the wheels would be put in motion the have me released from my contract on medical grounds. this would be the second time that this has happened to me, the last time was 7 years ago.

What was different this time, well firstly I knew what was going to happen, and secondly, I have been supported all the way through the process by the people I work for and those I work with. At no point during the last year was I made to feel like a burden which, to be honest, didn’t surprise me in the slightest, I was only ever told that my welfare comes first.

I am saddened that I will no longer be going into work, and not working with my friends and colleagues, which is what I will miss the most. This time though I have not been cut adrift and left to find things out for myself because they are still looking out for me and helping me.

That’s why today I’m feeling so lucky and positive, I have so many people in my life now that I am grateful for.

Goodnight have a great weekend and take care,

Gary x

Oh, and I’ve started to write a true love story, one I hope to finish writing in the next couple of weeks, fingers crossed.

To infinity and beyond

The day is almost here, tomorrow will be a turning point for me. In the afternoon I will be attending a meeting with the HR department for the organisation I work for, the NHS,. The meeting is about releasing me from my contract on medical grounds, it’s all very amicable and I’m prepared, but, still it will be a difficult and sad time for me for  a while.

I  can say that without the NHS and it’s amazingly talented, hard working staff, I wouldn’t be around  today.  They have looked after me and my various longterm health conditions for 57 years now, I’ve been a volunteer for them for 7 years, they have employed me as an administrator for the last 2 years, and I have loved every minute of it.

I will miss the work, tutors, participants, the friends I have made in fact I  already do, as I  have been off work  for a year now. The coffees  and the chats will continue with my colleagues, if they’re not sick of me yet, and at some point I hope to be able to return to being a volunteer in some capacity.

I have already made plans and set goals on what I want to do, and how I will achieve them, I am feeling really positive. Exciting times ahead.

As the saying goes “one door closes and another on opens”.

Take care

Gary x

Life – Death -Feelings.

I’m  having a strange old time at the moment. On Monday last weeweek I found out my stepfather had died, he’d been diagnosed with an Auto Imune Disorder, but he died from a blood clot caused by all of the treatment he received just before be was going to be discharged. Now I  can’t speak for my brother or my step brothers but I don’t feel anything. From the age of 12 until I was 28 he was my step father but pretty much in name only, he was rarely home, spent most of his time at work. He was production manager  at PYE Records. When he was home he would pretty much keep to himself and listen to music with his headphones on, that’s how  I remember him, cold and distant.

When I was 28 he and my Mum separated and divorced. I won’t go into the reasons for the marriage breaking down because it’s not relevant.  I think in the last 29 years I probably  saw my stepfather once, at the funeral of his 2nd son and my younger stepbrother. I feel sad for my step brothers though, because they have lost their father which must be heartbreaking for them.

I guess now that I  have written it down and read it back to myself, I  understand why I feel nothing. It’s because  I never really got to know him, he never met my daughters, so I guess that’s why I never thought of him as a father, and that is why I don’t know how miss him, or how I feel about him

So why did I want  to write this down, well what got me thinking about it today, Monday, was that I had to go for my monthly blood tests because I take some very strong medication for my Auto Immune Disorder. I wanted to write it down, so I could make sense of it in my head, and I’m glad I did as writing it down has really helped me to understand why I don’t feel anything g towards him, and I’m okay with the answers I found.

It’s just gone midnight, in the early hours of Tuesday morning. It’s my youngest daughter Erin’s 21st birthday today, the balloons and the banners are up, the presents and cards are laid out, tonight will be dinner with the family, the weekend just gone was all about partying with her friends. So feeling pretty proud and happy at the moment. My other 2 daughters will be 23 and 25 this year and I’m very proud to, this year is also my 25th wedding anniversary which also makes me very happy, all in all this year is going to be a good year .

Where the hell does the time go?

So in the words of  the truly great, Bill and Ted, “Party on dude”

Take care

Gary x