Harsh Reality

So, I haven’t written for a while because I haven’t been sure what I have to say, but based on recent events and people it has become very apparent to me that people are not quite aware of the reality of this illness long term and to me and family every single day.

 

There are two ways in which I see this as an issue. The first is my everyday life and how things have changed with people thinking that everything is good just because it’s positive. The second is the reality of the bad times that could occur, the things that could happen and precautions necessary.

 

  1. Everyday Life

My everyday life – nearly every single change is positive, but change is not easy. It is asking to change something about yourself which you are used to or even engrained within us. The highs and the lows that I experienced with my changes in mood, I hate them with all my heart, but I miss them. I was used to them, I expected them, I knew that nearly every day I would be waking up to something that didn’t feel normal. Usually waking up to the unimaginable difficulty of life and hopelessness. Obviously I don’t want that, but I miss it, I was used to it.

 

This time last year I was going out every weekend with my friends and getting horrifically and dangerously drunk to the point that anything could have happened and I look back shocked and horrified that I survived in one piece, I really do. I was doing those things with people that didn’t then and since haven’t looked out for me at all or even been a friend. However, I miss the whole thing. I don’t miss them or the drinking or the lifestyle, I just miss the routine that I was so used to.

 

Now, these things that have changed are amazing and due to these changes I am happier and the best I have been for many years so please don’t see me as saying I want the way my life was but if your life changes over night from one thing to another, I have to say it’s quite something to get used to. Someone described a bipolar diagnosis as ‘I trusted the Earth beneath my feet as the most safe and solid thing, then there was an earthquake and everything that I trusted and thought was true was no longer correct’. My diagnosis is like that, my whole life, as it was, pretty much stopped and changed, I am now having to build again, build the trust up and the assurance that I know who I am, how my life is, friends that will be there for me, what I do with my spare time, everything. These changes are positive and amazing and I couldn’t be happier with my life now, but the change is weird and takes some getting used to.

 

2. The Bad Times 

Lithium is fantastic, wonderful and my best friend, but the reality is, it may not work every time. Based on the relapse I had a few weeks ago, that was like someone pulling the carpet from underneath my feet. From the same person, but who is now feeling positive and good, it is shocking that the thoughts of suicide and cuts I made are even possible to have gone through my head but they did. So, what could happen next time if it were worse and I was on my own? The harsh reality is, those thoughts may have been actions because that’s my reality that I could confront at any time. Since, I am still getting used to medication and being better too, these could come at any time and could be any level of bad.

 

And no, I don’t like now having to live with my family all the time as a 21 year old who’s pretty content and independent most of the time. But I really need them here. As a person in a good space at the moment, I know lows are temporary and that I can get through them. As a person in that low, I’m not sure I would know that and I would probably be quite sure that I would never get through and never actually want to get through so could very possibly throw my whole life away. So, I have to have people here just in case I wake up and this is what I think.

 

In conclusion, things are so great right now and we are building from the bottom-up starting all over again. Beginning the life I want forever more. It is just important for people to realise that just because this is the case and just because everything is good the majority of the time, the realities that have to be dealt with for those more intimately involved are not so easy.

 

 

 

 

The New Reality from Mam!

Siwan has now been diagnosed for over three months and where we are today is unrecognizable from July 23rd when the diagnosis was given and we were informed she has Bipolar and GAD…it is unrecognizable in a good way and I am so proud of her strength, resolve and positive attitude to really put her self in a position to be the mistress of the illness.

Looking back, I was observing that there are some sayings that I used or heard before but had not really understood their true meaning or they have taken on a different connotation

  1. Learning as we go along
  2. “One day at a time”
  3. “I would do anything for my children”

 

  1. Learning as we go along

The one thing I have learnt is that I don’t have the answers to Siwan’s illness at all, which for me is quite challenging as I like to feel in control. Just understanding has been challenging as there is no manual that just tells you what to do; we are learning and getting a better understanding every day. We are writing, editing and re-writing the manual on a daily basis.

This has meant a lot of adapting, course correcting, trying, testing, learning and listening to how Siwan is feeling as she wakes up every morning. We were walking the other day and commenting on how nice would it be if someone could explain what her brain is doing so that we can have a bit of insight to know what to do. As an example she had a bad relapse a few weeks ago and we didn’t know how long it would last, would it come again?, when would she have a day that is bit less effort than others, etc. etc.

So Siwan is trying and learning …acupuncture seems to really make a difference, she is adapting her diet after doing some research, going out and walking in the fresh air is a positive activity and having a dog has been superb therapy.

However the one thing we have learnt is that providing a safe, supportive environment with people she absolutely trusts is a MUST,

  1. One day at a time

 

For someone that likes to plan and a control freak, the last few months have been a real revelation/challenge for me. As I alluded to above, you can’t plan or predict how Siwan will feel, you can’t think about life further than a day at a time as her brain can decide to not help her to function some days and make getting through the day a huge effort. These last few weeks have been like that for Siwan, BUT she is so strong and battles to continue to function and not hide away in her bed.

As her family and support mechanism, we have come to understand what it means for Siwan to live one day at a time. What we can do is ensure that her environment is supportive and safe, take potential stress “situations” away and help her plan day by day so that she can live a full life within the limits of her illness. For example organizing a social event or an activity more than a couple of days away provides a level of stress so this is something really easy as a family for us to help with and take it out of her ‘to do’ list.

One day at a time and plan for change – as a family all we want is that Siwan’s “every day” is as easy and straightforward as possible.

  1. I would do anything for my children

 

They say that some events truly change your life and perspective. I think its too early to say how Siwan’s illness will do that to my life however I know that I will not be the same person again.

I have always lived for my family and my two daughters and believed deep down I knew I would do anything for them. These last few months have taught me what that really means and how unimportant some of the things are that I have spent hours worrying, discussing, losing sleep and wasting precious time mithering over.

There is a reason why people put their family and children first …this mad world of showing off on social media, stress of being constantly in touch with phones, striving to have material things, just gets in the way of what is important. I nearly lost one of my daughters and in this mad world nothing else matters other than making sure Siwan is happy. If I can contribute a small part to ensure she is healthy and ‘in a good place’, then that is truly all that matters.

Now we look forward to the future and I have a little more understanding but there is so much to learn. What makes this whole period easier is that Siwan is helping herself and therefore it’s a privilege to be part of her support structure.

This is like running a long race without preparation so sometimes we will get the pace wrong and take some wrong turnings but I absolutely know that as we get to the last few miles we will be a stronger and a better family because of it and Siwan will continue to amaze us and make us so proud.

Relapse

So, as I said at the weekend, Friday was both stressful and tiring and could cause me to have a relapse. Well, unfortunately it did. Relapses suck. It has come for me as huge, very deep and dark depressive episode. I have been watching 24 and each episode is one hour of the 24 hour period so that’s the way I’m going to explain yesterday which was a huge low for me. I’m sorry that there are some hard things in here to read but I am going to be completely open and honest because the truth is tough but it should be known how serious, frightening and difficult Bipolar can really be.

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8:00am – 9:00am – Mood level 1.0

Alarm goes off. Brain just wants to deny it even happened and go back to sleep. So, go back to sleep again but then the alarm goes off again so can’t deny it. Start to realise that I am having a low. Struggle to even roll over. Feels like it’s too much effort to even move my body. But I have to get up because the dog needs me to take her out and feed her. Sit up crying. Get my legs out, still crying. Stand up, crying more and feels like my body is being dragged to the floor just wanting me to lie down. Feed the dog and sit down next to her on the floor while she eats, cry a lot more. Now I know that I have a lecture and work today so I have to get washed and dressed. My body feels too heavy to get the 5 steps to the bathroom so I crawl. I stand up and prepare my toothbrush and then have to sit on the loo to brush my teeth but can only bring myself to brush them for about 20 seconds because how difficult it is makes me feel like I’m going to throw up.

Shower time. I get undressed dragging my body around and turn the shower on from kneeling on the floor. I crawl over the side of the bath into the shower and sit on the floor while the water goes over me. I just start to get angry and frustrated that this is happening so I pick up the razor and angrily cut the side of my leg over and over. Now there’s blood so I stand up because I don’t want to be sitting in it and get my hair wet. I should wash my hair so I reach and get the shampoo but putting the shampoo on my head makes me start to heave with the effort so I just plonk it on my head and then let it wash of and get out. Now my leg really hurts so I feel annoyed about that but can’t be bothered to do anything with it. I go in my bedroom and sit by my drawers pulling out the first piece of clothing from every drawer. That’ll do. I sit on the floor half drying myself and then just put on my clothes. I shake my hair, doesn’t need brushing or drying. It’ll do.

9:00am – 10:00am – Mood level 1.0

I’m starting to get so pissed off with how bad this depression is and the fact it’s come back – so I cry more. Go and walk the dog pretty much crying, cold and feeling sick. Tegan (my dog) literally doesn’t leave my side just keeps pushing her body on mine so I know she’s there and I’m safe.

10:00am – 11:00am – Mood level 1.5

Takes about 30 minutes for me to give myself the pep talk that I need to go to my lecture. If I sit here and do nothing then it could get worse. If I get out and do what I am supposed to do then it my lift a bit. Get out the house Siwan and go to your lecture.

11:00am – 12:00pm – Mood level 1.5

Get to lecture and sit down. Literally can’t listen to anything, feel like I’m not really there and start to think about how hard this is and how unfair it is I am having a relapse when I’ve worked so hard to not have one. So more crying and got to hide it in lecture. Get amazing texts from all the family so I know they are there but so hard to tell them what is going on – it’s just too hard to speak or text or anything.

12:00pm – 1:00pm – Mood level 1.8

Getting up and going has helped a little but still got random crying on the way home. Speak to Nathan who makes sure I make some food and keep moving and doing things for the next 2 hours so I don’t go backwards. So I eat and drink.

1:00pm – 2:00pm – Mood level 2.0

Do exactly what Nathan says and keep doing bits and bobs.

2:00pm – 3:00pm – Mood level 2.0

More pep talk to walk Tegan and get to work. Work will help. Tegan needs me so I get up and on with it even with a bit more crying.

3:00pm – 7:00pm – Mood level 2.5

Work makes me smile. Nice that somebody needs me so I have to get on with it. Talking is starting to get easier. I would much rather be in bed but at least I feel a lot better than this morning.

7:00pm -8:00pm – Mood level 2.5

Still more crying but just tired and want to be lying down. Keep going Siwan. Mam gives me the reason to keep going so I give Tegan a long walk and go buy a ready meal so I can just put it in the microwave and eat proper food as Mam said.

8:00pm – 9:00pm – Mood level 2.5

Put the food in the microwave but too difficult to stand so sit down and Tegan sits on my knee and cry a bit more. Sit on the sofa and eat and just get annoyed that this has happened when I have worked so hard with my family’s help to make everything safe and prevent this. It seems very unfair.

Tiredness

So, as I have said previously, I am on Lithium and so far the side effects haven’t been too bad. But boom, I’ve been hit with a good ‘un today.

Long story short, Friday was the first time I’ve put myself in a stressful situation and really tired myself out. Lithium is renowned for the side effects – tiredness, acne, weight gain. The acne and the weight gain are manageable for me as of right now. The tiredness has been affecting me, day to day, getting very worn out by the evenings but keeping a regular sleep pattern and reducing all my stresses has meant that I am all good, mentally and physically. Managing this has meant no relapses and no struggles.

However, Friday, unfortunately, I was awake until 5am. Obviously I don’t drink anymore so I hoped that after some sleep yesterday I would feel a lot better. Unfortunately, due to the stress and the tiredness, queasiness has set in and a relapse was close. It has been a very good awakening for the fact that this management of my life, that I have been doing, is so crucial. A relapse is off the cards, no matter what, I am not and will not go back there. So, I am going got keep myself well away from those situations again and I am going to keep going with my healthy, regular sleep, happy lifestyle because struggling and feeling ill unnecessarily is not for me.

Note 2 from Dad – Bipolar Punctuation

To help explain the condition of Bipolar, in particular with relation to Siwan and her handling of it, I am going to use punctuation marks to illustrate what the condition isn’t, and what it is.

Bipolar isn’t parentheses. There isn’t a definitive opening bracket to it as many people aren’t diagnosed for a long time [siwan is 21, the average age I think is 25 for a medical diagnosis] but the underlying problem can exist unrecognised for years. More importantly, there is no closing bracket…at all. If you are bipolar, it is there – always. It can be managed through a daily dose of Lithium and the sufferer’s tenacity in the face of an often crippling mental illness, but it doesn’t fade away and isn’t curable per se. This is a difficult concept for friends, relatives and the person afflicted to come to terms with, but there it is. We all have to recognise that this condition is now something that Siwan will have to contend with for the rest of her life. It would be great if it was simply an interlude in her life  but this is not the case and upsetting as this may be to come to terms with, we need to match Siwan’s acceptance of the permanence of Bipolar in order to accommodate the adjustments necessary to assist her through this challenge. We don’t know when she started suffering, but we do know she is pushing against it now and always will be. We don’t know where to insert the opening bracket, and what’s the point trying as there is no closing bracket in this sentence.

Bipolar is neither a full stop [or period if you are American] or exclamation mark. It is not the end of the sentence that Siwan is writing with her life. For many sufferers it is, particularly for those who are not diagnosed early and who slip into depression and ultimately end things. I do recall a statistic quoted in the compelling documentary by Stephen Fry [it’s on YouTube, please find the time to watch both episodes] which was worryingly high, but Siwan has been fortunate in being so young at the time of diagnosis and is now working with her therapist to stabilise everything so she can get back to proving how amazing she is.

I borrow from an American internet phenomenon of 2013 when I say that Bipolar is a semi-colon. Project semicolon came in to the media spotlight two years ago by encouraging people to share their struggles with mental health, depression and suicide. The image of this punctuation mark tattooed on peoples’ skin is very striking when you think of the semi-colon in punctuation.

“A semi-colon is used when an author could have ended their sentence, but chose to pause and continue on.”

Unfortunately some Bipolar sufferers aren’t able to do this, but Siwan has had her pause and is now embarking on making the rest of the sentence she will write during her life an interesting and fulfilling one. In response to one of her blogs  a family friend, who has a brother with Bipolar, sent a message that has been incredibly helpful to us in illustrating that the condition is merely a semi-colon, that it needn’t be a full-stop/exclamation mark, and that it’s ongoing nature shows it not to be a parenthisised phrase in life. Here is an extract from his brilliant note.

“The basic thing I wanted to get across is that from my brother’s experience it is perfectly possible to get on and have an enjoyable and fulfilling life with bipolar. I think he has struggled at times and certainly has learnt to avoid or deal with situations that cause him stress or to ask for support when he needs it. He has probably had a different life to what he might have been expecting when he left Uni for example but no less rewarding and a life that is right for him.”
I have read these sentences so many times over the past month and taken note of the positive, yet cautionary message they convey. Like the brother in the note, Siwan has made Bipolar a semi-colon in her life and the rest of the sentence she writes may be different from what we all expected, but I am certain she will make it fulfilling and right for her.

Stresses.

So, I have to begin with an apology – been away for a while. Been moving house, sorting out job etc. Stress.

I’m basically going to write a short one today about stress since there seems to have been more than normal recently. Luckily, the reason I’ve had more stress is to reduce the stress in the long run which is amazing but it has been a tough week and I’m going to let you know of what I have realised the most.

Basically, going on my medication has been amazing and I can not begin to tell you the difference it has made – it’s like I’ve gone from having a tornado in my head where you can’t see anything clearly, theres loads going on in the highs or you are going through the foggiest place in the world so you just give up in the lows. That has literally all gone – I am now almost functioning as a normal human!

But, then stress comes along and the smoke machine comes out. It’s really like you can’t see in your own head properly again, and things are foggy and easier to avoid again as they are stressful so my conclusion is as many people have told me by now is avoid stresses because if this is the difference the little ones make, then who knows what could happen if they were big.

Everyone, I know who has any kind of knowledge of Bipolar, the first thing they say is avoid stress, not like oh just avoid as much stress as possible, as that is what most people do, but more like, AVOID STRESS!!!!!!!!!! Otherwise, you get relapses, shit storm, tornado, mess, chaos. So, avoiding stress is the priority.

I think this is the biggest area that people I speak to, I have an issue with, because they say, oh well you’re better now, so it’s not really lifelong. Ha, ye right. If you really can’t have stresses and small stresses are an issue and can lead to serious consequences, then you are living with it every second of every day. I’m sure for me it will get easier too but stresses are always going to be an issue so yes it really is a lifelong issue.

That is the end of my rant! Over and out.

Dad’s Take on the Last Few Months – theunnecessarilylongroadtodiagnosis

When something in your life malfunctions, say your car, washing machine or bedside lamp, there are two approaches to rectifying the problem. One involves two distinct stages and can only be adopted by self assured, confident people that assume they are never to at fault and the world owes them a rapid solution. The other involves three stages and and is the path normal, kindly people tread, and I am very much writing as one in this inefficient but benevolent camp. 

Stage one is introspection mode – to look at your broken down car and assume you missed a scheduled service or put the wrong fuel in last time you filled up, to stand in front of your washing machine and blame yourself for putting too many towels in or not cleaning the filter when the light came on, or to contemplate your navel in the darkness and swear at your ineptitude for putting the wrong voltage bulb in the lamp or the wrong amperage fuse in the plug. This is a time consuming stage that involves blaming yourself for being an idiot and causing the failure, and the laborious eliminating of all the things you could have potentially have done wrong wrong to cause the issue.

 

Stage two is the warranty issue. Blame the manufacturer and call them immediately regardless of whether or not the appliance is in or out of warranty, throw a hissy-fit of biblical proportions and get the corporation to assume responsibility and repair or replace the guilty article.

 

Stage three is to sit back, life-weary, and accept that things go wrong, wear out and simply need some attention. This is how life works. NASA repairs worn out stuff, ergo so do families.

 

A great many people skip stage one, shout and scream and get others to fix their shit at stage two. Generally speaking these people are arseholes but they do get stuff done, quickly and efficiently by absolving responsibility themselves and forcing the corporate world to take action. I envy these go-getters but I know I can never be one. Some chilled-out dudes go straight to stage three and this is where the vast majority of malfunctions start and end. I am not cool enough to pass go, collect $200 and get directly to this resolution. I wish I had the wherewithal to get directly to this point and Sian, my wife, certainly arrived at this point before I did, but human nature dictates you question yourself, you kick the offending article, and then you shrug your shoulders and accept things stop working and there is actually no-one and nothing to blame, it just is.

 

I start at stage one, I restart stage one, and then I decide to revisit stage one from another angle. Dickhead. At the age of forty-eight, I have put unleaded in my diesel car once in my life, I’ve never skipped a scheduled service, I err on the side of caution when it comes to loading the washing machine with potentially heavy items, and I always read and follow the little sticker on the cable about the correct fuse/bulb specs. Why do I tread water in stage one? It defies logic, but I wallowed here with my wife as we watched Siwan malfunction.

 

Siwan is not a car, a washing machine or a bedside lamp. She is our eldest daughter. Our role in life is to care for her, cherish her, and when necessary help fix her. When Mildred appeared, we knew things were wrong and we embarked on the most impressive stage one…ever. Months of late night discussions of what we had done wrong as parents, endless soul-searching and wracking our brains about what we could have done differently. And I mean months. This, fundamentally, is wasted time I wish I could reclaim. We then stumbled into stage two and looked at Siwan as a warranty issue – she was the problem and it was up to her to come to her senses and grow out of this malaise. Again, missing the mark, wasting valuable time [this is, after all. someone’s life we are talking about] and assuming there was blame to be laid somewhere. There is no blame, why do we always look to blame someone?

 

Finally, we got to stage three, Siwan wasn’t functioning properly, it wasn’t our fault [that took us about a year to work out], it wasn’t Siwan deciding to be a pain in the arse because her corporate head wanted to wring every last parenting cent out of our bodies[that was another six to nine months of incandescent arguments], it was simply life. She had some hereditary imperfections, magnified by certain experiences she had gone through, that meant parts of her were no longer functioning as they ought to. Nobody’s fault, nobody’s warranty issue, just normal wear and tear based on her constituent parts and the friction of life. This tipping point involves seeking medical expertise, being open to stark truths, and absorbing knowledge at an age when your skin is possibly too thick to let such stuff in easily.

 

This is where we are with Siwan and Mildred, and despite our inefficiencies in getting her diagnosed, she is alive and most definitely kicking. We are not the best best parents ever but we haven’t fucked up totally so lets be thankful for small mercies.

 

We love her, as always, to the moon and back [Sian], to infinity and beyond [me].