Saturday, 20 February 2010

Being Bipolar Part Three – Day to Day Living

As I come to this subject, I wonder if I haven’t bitten off too much. I wonder if it is too vague. I keep saying that there should be more written about the mundane day to day experiences of being bipolar or maybe the experiences of having any long term mental illness. I only have experience of Bipolar Disorder but I am sure there are similar struggles or even worse struggles with illnesses such as schizophrenia.

I have asked myself what my life would be like if I wasn’t Bipolar. It is very hard to know because my experience spans almost 28 years. If I am honest, I was suffering symptoms way before that. I have effectively been bipolar for ever, at least as long as I remember. I think that there maybe too much emphasis is placed on first symptoms and diagnosis. First symptoms only come to light when they are severe enough to require treatment. In my case, it was a long journey to diagnosis from the first severe symptoms, in my case a manic episode.

I am trying to write about how it is to be a “stable” bipolar sufferer. I know this term is not generally liked. It is liked as much as “normal”. I talk about “stable” as living with good self management skills and medication that takes away the extreme symptoms. It may mean you can pursue a career but more likely it means you can get on with your life with limited intervention. I know some sufferers will continue to have episodes of depression or mania.

Being Bipolar means that you have to live with a regime of medication and psychiatric support. My psychiatric support is four-monthly appointments with a psychiatrist. Most times I could manage without but it is probably best not too drop off the radar completely. My GP handles prescriptions of psychiatric meds but they only do what the psychiatrist tells them. Even though I take meds every bedtime and every morning, I still sometimes forget. Things happen to distract you I guess. The best laid plans sometimes fail. Prescriptions in my case are monthly. This means I have to order my new month’s supply at the appropriate time. Here again I have a system. It works well but I can still occasionally forget and leave it a little late.

We sometimes do travel like “normal” people, although some people suggest that we shouldn’t travel. We might have a manic episode and do something illegal (I am joking!). If we do travel, we have the additional stress of making sure we have enough meds. We might have to arrange to get a new month’s supply early. Stress is the last thing that bipolar sufferers need and travelling becomes difficult. There is also the issue of pre-conditions on travel insurance. Most vanilla insurances would probably exclude treatment for bipolar disorder. There are specialist companies that offer insurance for people with long term illnesses. I’m sure it is normally more expensive. Charities like MDF help with such matters.

Very few bipolar sufferers continue a meaningful career. As in my case, the illness eventually gets the better of you and you end up on disability. Eventually you might leave a job or several jobs, sometimes with no warning. The result is that your resume or CV is trashed. It doesn’t need a brain surgeon to realize that you have problems. It probably wouldn’t matter that you hadn’t declared your illness. Whether or not you declare your illness on job applications is another major stress for bipolar sufferers. This dilemma also applies to other life situations. Do you declare your illness to new people or groups that you encounter in life? I have tried to be particularly open about my illness but I sometimes wonder what the cost is. I am beginning to think that I should be more selective in who I tell. We are in danger of stigmatizing ourselves if we are totally open. I will try to address stigma in a future part of this blog.

I have talked about social isolation. A lot of bipolar people live in isolation and tend to isolate them self even more. This leads to extreme loneliness. Even the best of friends will back off. No one wants to socialize with a crazy person. Maybe I am generalising too much. My social diary is not exactly overflowing with activities. I admit that it is very much due to the fact that I don’t reach out myself. Maybe fear of rejection or agoraphobia. Sufferers do lose a lot of friends or at best they become acquaintances. They become tired of apologising or trying to mend bridges. I constantly try to work out why I am so reluctant to leave the safety of my small flat. I don’t think I suffer from agoraphobia. I am not talking about major socialisation, just the odd person coming round for coffee or meeting you in town for coffee. The only people who might drop in at my flat are fellow sufferers. I “never” drop in at anyone else’s place. My slimming world meetings are my only social outlet. I also meet other sufferers at mental health related meetings or events.

For me personally, the worse thing about day to day living with bipolar is the uncertainty of how you will wake up each morning. Before this is the uncertainty of how you will sleep. Will you sleep 6 hours or 12 hours? Will you have weird and maybe lucid dreams due to the medication? Will you be able to carry out the plans you have made for the upcoming day? It is very tempting not to make plans because you may not be able to make it on the day. You might worry as I did about making it to your own birthday party. How do you explain that you are not up to it and your friends should carry on without you? Do you invite other sufferers to such occasions, even if you doubt whether they will make it? You might be stigmatising them either way.

Apart from the trouble of waking up in a difficult mood, there is sometimes the thing called rapid mood swings, where your mood can switch suddenly several times in a day for no apparent reason. Even worse is the mixed state, where you can experience up and down moods at the same time. You might start a day quite well and suddenly be unable to function. The reverse can happen when you start a day down and suddenly be fine for no reason. The danger here is that you make plans based on the morning mood. The afternoon mood maybe better or worse but you have already made the plans. It makes you seem very unreliable.

A lot of time is spent on self management, keeping well if you like. When any kind of extreme mood is experienced, we do our best to handle it. It is relatively easy to handle the upswings if you can spot them in the first place. I think that having years of experience gives you the insight to spot and handle the swings. This is best done at the early hypomania stage. When you hit full blown mania, you have pretty well lost control and you are away with the fairies. Depression or depressive episodes are notoriously hard to handle. Everything can seem so hopeless and it is hard to carry out a plan. I have not suffered much from depression and I can’t say whether insight improves. I can’t say if it gets any easier to handle. I defer to others who suffer more depression.

Friday, 19 February 2010

Being Bipolar Part Two – Social Isolation

Social Isolation is probably one of the worst things about living as a “stable” Bipolar sufferer. I am talking about someone whose meds do the job and they have good self management skills. They just want to get on with their life. It is well known that most bipolars will not return to their chosen career. Most of them will find it hard to get any employment. I know this from my own situation. I feel like I was on the scrap heap at 57.

The bottom line is that many bipolars have a lot of time on their hands. Some find meaningful volunteering opportunities. Some have access to resource cafes or drop-in centres. Some spend their time on social networking sites. Some will write or blog. Most activities seem to be ways of killing time.

My perspective is as someone who lives alone. I sometimes go for several days without seeing another person. Sometimes the only person I see is the supermarket checkout lady. I am socially isolated. I can’t blame this on the illness but it certainly reinforces it. I value my weekly Slimming World group. I try hard to make it every week because it one “normal” activity in my life. I was never good at socialisation, even in the years before I was labelled as bipolar. When I was married, it was not so much of a problem. That smacks of codependancy. I have been separated for about 10 years and I am back to living alone. I always relied on my workplaces for my socialisation. In the last ten years, I have hardly worked.

I tend to isolate myself. I am not sure whether it is connected with being bipolar. There might be a subconscious desire not to make new friends. The illness has cost me so many friendships. I got tired of explaining and apologising. It might seem convenient to avoid building new relationships.

I don’t reach out to friends. I don’t even reach out to on-line friends who I have never met face-to-face. That is something I have to work on. I seem to have acquaintances rather than friends. I see a friend as someone you meet occasionally, maybe for a pint or a coffee. A friend will come round to visit, call on the phone or join you for a restaurant meal. I have lots of “friends” on Facebook or Twitter. I would class most of them as acquaintances. 99% of them are too far away for socialising. I have rarely had friends as I described. It doesn’t help that I have an apparent phobia about using the phone. Don’t get me wrong. I like people and I like to be with them. It is possible that my social isolation is more to do with my personal character than it is do with being bipolar. Bipolar just adds a few more challenges to the task.

I would like to hear about other people’s perspective on social isolation. I know it is a big issue for Bipolars. My experience might be different because of my background and life experiences.

I always struggle when I am asked “What do you Like to Do?”. People will suggest that I join a club or something. Maybe I am boring, but I am rarely interested in what is on offer. I am very good at finding excuses not to do certain things. I am so focussed on my weight loss that I avoid activities that involve eating or drinking. That cuts out a lot of social activities. I am in touch with a walking group. I have never gone with them. I have plenty of excuses. The first and valid excuse was that they walk too far. That was true but maybe not any more. I would need a lift to get to most walks. I hate relying on lifts. They usually eat in a pub after the walks. I have so many possible excuses in my head. It is not surprising I haven’t been yet. They do have social activities apart from the walking.

I always like to be open about my illness. I am realizing that it not always the best policy when joining in “normal” activities. Maybe I find it uncomfortable to explain why I don’t work. I tell myself that I have retired early. It was not really by choice and I feel uncomfortable with it. It might be easier now I am sixty and holding Senior Railcard !!

I know that I have to get out more. Making friends might happen from that. I have to use my free bus pass for fun rather than attending appointments. I can now get reduced rail fares. I can swim for free once I get a card. I have started to keep a weekly schedule and I have bought a desk diary. They are helping a lot. I now need to schedule some fun stuff and stick to it.

I guess that I saying that my social isolation was always there. Being Bipolar has added to the mix and created some more challenges. I think I have rambled on enough for one blog.

Thursday, 18 February 2010

Being Bipolar Part One

I'm sorry I haven't blogged much lately. I started blogging just over a year ago. I had the possible advantage of being slightly hypomanic at the time. In my book, I chronicled my life as affected by being Bipolar. I talked more about the extreme behaviour. Whenever I hear a sufferer talking about bipolar, they are always encouraged to describe the more extreme behaviours because it sexier somehow. Maybe it might sell more newspapers or magazines, or maybe get more listeners and viewers. I think it is more important to talk about the day to day struggle of sufferers, the search for hope, the search for wellness, stability and recovery. Recovery is the Holy Grail of the Mental Health system. Why does no one talk about it? Recovery is good for sufferers and reduces the burden on Health Services. Doctors seem to focus on stability but it is rare for anyone to monitor the road to recovery. You can't just stamp someone as "stable" and let them wander off into society. They will have issues such as getting back to work (if they are very lucky), combatting social isolation and living with the stigma of being mentally ill. Services such as resource cafes or drop-in centres are encouraged to offer a temporary place to go. There are few, if any, places to go once they are more "stable". I hope to talk more about the struggles of "stable" sufferers and my personal struggle to recovery.