A Little Progress

My last post was a bit bleak and showed a lot of my frustrations for my situation. Thankfully things have slightly improved since then, which in relative terms is a big improvement. The regression of my health due to moving was really weighing on me and sending me down the dark path mentally. I was lost at to what to do, but had one thought that was founded in desperate times calling for desperate measures.

Towards the end of August I decided to try some things to help my health as napping twice a day and full night sleep and yet still feeling ill and exhausted was breaking me.

I decided to test my non-eating thing I did in hospital as it’s the only time in the last 7 years I really have felt like I had energy and focus.

I didn’t eat for 24 hours but drank plenty, and I felt so much better in mind and body. The difference was quite incredible. Since then I’ve skipped breakfast and not needed my midday nap. I still need my afternoon one and a full 9-10 hours at night, but there is something here that I do feel needs further investigation.

I stated in the previous post that I have been seeing the CFS specialist in Bristol. She agreed to take my case on but in letter to me and my doctor, stated that I still don’t completely fall into the bracket of what they deal with. I’m happy to be with them and we’re focusing on pacing and sleep related things for now. Comments from the specialist in a letter to myself and the doctor suggested that further investigation might be useful. However, after trying to stick with the doctors I was previously with, instead of changing because I’ve moved, they decided not to keep me on so I had to change, even though it would have helped so much to keep a doctor that knew the circumstance. I’m yet to make an appointment and pluck up the confidence in them that they might actually be supportive. I’m really going to try hard to do it this coming week.

Another thing that has really helped is that I take sleeping tablets to help recover when over exerting myself. This is more effective than my one hour nap in the afternoon. I will usually take it about 1pm and be asleep for three hours. This helps me get a quick fix when beyond exhausted and ill. Although, I have become a bit too reliant on them as after a two week break at family I over spent on energy and have on average used my extreme nap about every three days instead of once a week as intended.

The two main theories with this seem to be either some allergy situation or something relating to blood-flow i.e my stomach and brain do not get enough blood and therefore nutrients, oxygen etc. Both these theories could explain why I have stomach issues, brain fog, fatigue and why over the years things have been slowly getting worse.

They are just theories, but it’s nice to have a little focus back from the not eating in the mornings. I still get tired very quickly and it takes ages to recover from spending energy, but to have some back is refreshing. The only issue is once again I’m not balanced and now I have this new energy I straight away want to use it to ‘achieve’ and do things when actually I should be resting and pacing it as the specialist is trying to teach me. I’m a very slow learner though.

One other thing that I should mention is the curious restricted feeling/ache in my chest on the lower left side of my heart. I started to have it every so often about six months ago, but its frequency and intensity has increased over time and I feel it more when I do push my energy levels. It’s one that I need to bring up with the Dr.

New Accommodation and CFS Specialist

On the 20^th of June I moved house. My old accommodation was supported accommodation and thanks to the environment being quiet I’ve been able to balance the health very well for the past year. I was able to sleep well and this stayed of a lot of my sickness. As always it is slowly requiring more sleep to do things, but it was being balanced.

However, moving into somewhere new has been a bit of a mess. I ended up paying more than I thought I was going to in this new place and even though I can afford it the extra money was meant to go to free up debts. I should have paid more attention to the contract but for various reasons my brain wasn’t paying attention and I had gone into overly trusting Steven mode. I’ve learned not to do this too often as it causes problems but slipped back into. Trusting people is good, but not if it’s going to have a negative effect on you. And that’s the mistake I keep making in life.

This financial change caused a lot of stress and frustration as it constantly feels like I’m being financially penalised because of my health. I even stopped paying some of the bills/money for where I’m living now. Some of what I have to pay is for support but it’s not needed as all I need is an environment that I can rest and get my naps. And with that not being provided I felt it was wrong to be paying that money. However, morality rarely comes into these things so after a meeting with my care coordinator, my previous housing officer and the owner of the care business that owns the house I was pressured into paying that money. This was done without any real justification as to how it actually benefits me paying that money. Of course they said all the right things and how I can use the paid support as time to help me and they’ll use that time to help me. But deep down I knew it was just words and would just have to pay it and accept once again that this is just the way it is. And I was right. There hasn’t been a use of the time I’m supposed to have to help me, but just clean the house. I’ve come to terms with this now, but for the first month of living here it was hard to accept.

There are various processes underway of possibly finding somewhere else to stay but I forget that actually accommodation is very limited and a lot of it is actually most likely worse than I have now. Also that it’s very expensive no matter what accommodation I’m in and that I’m lucky to get housing benefits because of my sickness. It’s all relative I guess, but I think about what I could have been earning if I was healthy and what accommodation I could have had and surely I should be able to have that. I know that’s silly and have to keep accepting things and being thankful for what I do have and not angry for what I don’t have. Not easy at times.

In terms of my health, my sleep is regularly disturbed in the new accommodation and this was causing a lot of struggles for the first few weeks. Because I wasn’t getting enough sleep I was feeling nausea's and very nearly sick on a few occasions. The depression hit back and the anxiety was slowly creeping in too. If I don’t stick to the routine my body then goes to the other extreme and I can’t sleep at all. Everything gets very scary when this happens and is what led to me ending up in hospital last year for two months. My body and mind just break and I don’t ever want to be in that state again. The only thing that fixes me is rest and lots of sleep. I wasn’t getting it in this new house so stayed at my parents house while they were away the second week in July. I was able to get the naps I needed and felt relatively okay because I was able to spend a week recovering.

During all this upheaval I made sure I let my care coordinator know what was going on but there was no real way anyone could help. This adds to the depression as it all feels so hopeless at times. The fragile tightrope walk of my health is harder and harder as the months and years go on and I’m at a stage now where even the slightest disruptions for a few days can create very big problems. It’s hard trying to make people see that and accept it. I don’t expect them to understand, but see this is how it is for me. It’s hard not feeling like I’m being a fussy git, or to show people that I’m not being a hypochondriac.     

Even after staying at my parents house and recovering a bit it was back to disturbed sleeps when I was back at my new place and once again found myself getting very ill. I had to find something that could reset my sleep and make sure I was getting enough. I took a big risk and decided it was time to try some sleeping tablets. So on Thursday of last week 4^th of aug I skipped my midday nap and then at 2pm took a couple of sleeping tablets. This knocked me out for three hours. The risk came in not being able to then sleep at night and make things worse. Luckily I was able to sleep and got my usual 11-9ish sleep. I felt a lot better and was very relieved it worked. I think now I’m going to do this once a week and it will allow me to keep myself from getting very ill.

I’ve also had a meeting with a CFS/ME specialist in Bristol. This took place on the 8^th of Aug and was reasonably beneficial. It was a consultancy meeting and we discussed all that’s been going on over the last 6-7 years and more so what’s been happening recently. She said I definitely fit into some of the CFS criteria but the feeling relatively okay after sleeps and the vomiting don’t really match the pattern of CFS/ME. She said usually it feels like you’ve had no sleep. The problem is I talked too much about how I do feel fine if I do get the massive amount of sleep I need. I didn’t clarify enough that if I don’t get that, then yes I do absolutely feel like I’ve had no sleep and am totally drained of all energy and fatigued beyond belief. I’ve taken notes and will make sure I tell her this is the case when I see her again in a couple of weeks. As for the vomiting that’s the really strange one. The fact I now start vomiting after a short period of time when not getting my naps is not part of the CFS/ME bracket so she said she’d speak to her co-worker and see if he had any ideas at why this is happening. 

Time To Slow Down Even More

This is a post I put on facebook recently and covers most of what is going on with health at the moment.

Just a random 'explaining' post about things that are going on in the life of Steven (mostly for those in Scotland, but applies to all and explains my lack of contact or visits). I hate posting about what can be seen as negative things going on in my life as they can come across as complaining, but I feel strongly the following post needed to be shared. (doing it via facebook seemed the most efficient way of getting the message out).

Long story short- its the health stuff, which also has a negative impact on money stuff. The health has been getting slowly worse over the years and i've been very very fortunate to cram in a lot while I could. However I can now barely make it through the day without two naps and a good 9/10 hour sleep at night. Whatever is going on with the cfs it has got to the point where I have to be very strict with myself or I get even more ill both physically and mentally. It's an absolute 'insert own level of bad word' to accept but I do accept it.

All this said it means for those, even at a relatively close distance i'm not the friend I once was or want to be. Friendships work two ways and I can barley be a friend anymore at least not the way I was or want to be. I just don't have as much energy or concentration or the emotional control not to get upset, even when doing simple things like writing emails to people. Skype seems to be a good medium, well once I can afford the internet in my place of residence. Once I do have it i'll let people know my skype so perhaps we can keep in touch that way.

For those in Scotland I'm not able to show you how much I love and value your friendships by coming and visiting and giving you hugs the way I want. At least not for now. Things can change and i'm going to try and be strict over the next 6 months in the hope I can gain back some energy, but for now I can't come up. I have a number of things planned (have been for a long while), mostly book related, that are going to use up a lot of effort, but I can't take on anything else or add to my future schedule.

Despite the heartache this causes me I am in good spirits! I have been blessed with so much and learned not to take the simplest things for granted. People have it a lot worse than I do so I will always try to honour what I do have and not complain about what I don't have. I have been beyond fortunate to make new friends here in England that look after me and show me the same kindness like so many special souls that I have met over the years have.

I am waiting on a referral to a cfs specialist in Bristol and doing little social things and book related things when I can to keep me feeling sane and productive. I have no doubts that every experience I have is important and that even though I feel trapped a lot of the time I have gained a greater love for each human on this planet, even though ironically I barely have the energy to show that love by being there for people the way I used to.

Please know that I am happy and still believe there are exciting things ahead for the future. I just have to take it at a snails pace. I may not be successful in the eyes of a materialistic world, but I consider myself infinitely successful because I have such loving friends and family.

One Year From The Breakdown

I have been meaning to do an update on this blog for a number of weeks and it is ironic that I’m doing it on the second worst physical health day since I left hospital in July (the worst was yesterday). The world is swaying and moving in all sorts of directions while I sit very still at my desk. I don’t know what it is about the exhaustion, fatigue and not getting enough sleep that causes this level of brain/sensory malfunction and nausea- wow I feel like I'm going to puke everywhere- but all I can do is keep it under control with lots and lots of lying down. Sleep would be better than just laying down, but when I am at this level of over-exhaustion, sleep actually becomes difficult and leads to this level of illness being very hard to temper- hence the actual breakdown a year ago when I lost control of the balance.

It seems to be this time of year that tips the balance (mostly from the clock change), but it is also just a number of coincidences (like the work/move situation last year) that have led to me being active when I should be resting. I regret absolutely nothing of the past week, as these choices are mine to make and I had a lot of fun with people I care deeply for. However, now I must live with the consequences and do my best to rest up so I can function more than just being in bed almost all day. In a few days, as long as I behave, all will be relatively okay again.
   Fortunately I have just been able to nod off for a thirty minute nap and this is a huge win for getting my health back to a level I can cope with. Eventually the sleep will get back under control it just takes time for whatever goes on with my brain/stomach/body chemistry to settle down. 

That’s an update of physical health as of this period of time, but so many wonderful things have happened since leaving hospital and I have been able to balance things very well by being strict on what I do. I have been able to have trips to Scotland and been able to spend time with my family. I started a social group here in Gloucester to try and make some friends and not feel so lonely, and it actually has worked out better than I could have hoped. I have met some lovely people and feel very fortunate to know them. I have continued my writing as best I can, and on Saturday the 7^th of May (5 days from now) a novella of mine will be published.
   I feel greatly blessed by the good things in my life and have learned to accept the challenges of this fragile health balance. Ultimately, I cannot regret or get angry at my health problems any more as in so many cases it is because of my health that I have met such incredible people.  

  

Of course all of the goodness and adventures have to be offset by lots of sleep and naps, but I have been able to do this over the last 10 months thanks to the support network I have. However, as I have mentioned in previous posts the health stuff is ever so slowly getting worse. I do need longer to recover from exertions and have only been able to maintain activity without getting too ill by napping twice a day for 45 mins to an hour each time and getting 9-10 hours sleep. Without that the fatigue and sickness takes over, like they have this weekend after a week of only having one nap a day. It is so silly that such a simple thing has such painful consequences, but that is the nature of whatever is going on with my body. It is hard for one who has such an active mind and desire to accomplish so much in life to rest and do nothing, but as I say I can do this because of all the good people and things I have in my life.

There are lots of exciting adventures ahead, but they will have to be taken at an ever slowing pace, but I have learned to accept this, and am so thankful for the help I’ve received on this journey. I owe so much to so many wonderful, kind and loving people.

Mental Health Discussion and Update On The Last 10 Months

(Potential triggers, but mostly a casual discussion)

In regards to my mental health (anxiety and depression for me), it is still a struggle at times, but only on rare occasions. This is mainly due to the safety net of my support network, as I know I can rest when I need to without fear of all I’m trying to build collapsing around me. However, a lot of the ability to deal with the mental health has come from my own developing perspectives and attitudes (a lot of them were discussed in previous posts before my break down).

One of the main difficulties with mental health is that triggers can be physical and mental and they are also interconnected and feed off each other:

I can suddenly have depressed and/or anxious thoughts (the mental) and this trigger physical things like a change in brain-chemistry, tiredness, increase in heart rate, etc. This then makes the thoughts worse, which can make the physical worse, and so on.

Or,

It can start as a physical- I can be tired, or experience something in the physical world around me that triggers a mental reaction, or randomly have a spike in brain chemicals, etc and this cause the depressive and anxious thoughts (the mental). The thoughts that appear can then make me more tired, change brain chemistry, and make the mental worse, and so on.

To stop the cycle (or break it) I do my best to know what the starting trigger was, whether physical or mental. It helps me rationalise what is happening and see the reality i.e. it’s just a random spike, or it’s the fact I’m not sleeping and tiredness making me feel down etc etc etc

I can then go through my own positive thought repetitions and thought stopping phrases: for me (everyone's different) this keeps the anxiety and depression at bay. What has really helped is focusing on the reality and the truth:

With my depression, all the mental triggers, and thoughts following a physical trigger, are lies, such as, ‘I’m not good enough,’ ‘I’m living a pointless life,’ ‘I will never achieve my goals,’ ‘I’m worthless,’ ‘I’m pathetic’ etc (these are some of the more mild examples), but the truth and reality is the opposite. So any time such thoughts creep in I counter them with, ‘I am good enough,’ ‘My life is beautiful,’ ‘I will achieve my goals in time,’ ‘I’m a good person,’ ‘I have value to so many people,’ etc.
   With practice, a lot of will power, and time, it has worked for me. I have learned to see the wonderful truths about myself that my depression tries to kill, even with the health struggles triggering and amplifying the depression.

With the Anxiety it is very much the same for me. Whether a physical or mental trigger, I become afraid of something that 9.9/10 times isn’t actually going to do me any harm. However, my mind has created pathways to tell me it’s scary and dangerous, and this can easily create dramatic physical and mental responses.
   I have employed the same efforts to see the reality when I have had anxiety struggles in the past. I do my best to see the lies. I often put myself into the fray of my triggers to de-programme the irrational thoughts. I have learned to do it slowly and carefully, and repeat the process over and over and in time have broken a lot of the triggers that cause me my anxiety. I’ve even found telling myself I don’t have anxiety or fear help stop the triggers. By believing I’m not afraid of things, I actually stop being afraid of things.

That said, sometimes the impulse is too strong and requires a lot more time and help to break the triggers. I’m just commenting on how certain things have helped me. Everyone is different so we have to find our own ways of coping and beating the challenges we face. However, the more we share the different ways, and try the different ways, the better chance of finding one way that works to help us in our specific difficulties.

I think that’s most of what has gone on with the mental health side of things over the last 10 months. If you struggle with your own mental or physical health please always seek help and never stop seeking help. You are stronger than you know and an important individual that can touch the lives of others and have a good life even with these challenges. It may not be the life you hoped for, but it can still be beautiful in its own way. Never give up on hope, and realise that sometimes you have to create that hope yourself, or hold on to the hope of others. I often have to draw on the hope of others. 

And with all that said, I need to rest and hopefully sleep. Much love to you all.


Here's a link about CFS if you want to learn more about the condition.
http://www.nytimes.com/health/guides/disease/chronic-fatigue-syndrome/print.html