I started this blog as a shared journal about my life with bipolar. I keep a physical journal but I thought this would add another way of expressing myself. In some ways it has, however, I’ve had difficulty keeping it up because I’ve had long periods where I’ve been unstable and I’ve had nothing worthwhile to say (even to myself). Over the past two years I’ve been living in the black hole of depression, only coming out into the crazy brightness of hypomania and mania occasionally before slipping back down again. My psychiatrist has prescribed a number of antidepressants from all the groups; MAOIs, SSRIs, tricyclics, SNRIs and n-acetyl cysteine. I’ve also had rTMS. Nothing has worked, in fact most have flipped me into mania at very low doses so I haven’t reached therapeutic levels. I was meant to have ECT recently but my husband is being treated for bowel cancer and I can’t leave him to spend weeks in hospital.
I’ve been suicidal more times than I can count and seeing my psychiatrist is the only thing that has stopped me going ahead. He lays the guilt trip on me: “What about your husband, your mother, other members of you family, your friends, your dog. Everyone is affected when someone kills themselves.” Sometimes I feel really angry about this because it seems like in order to prevent others feeling bad I have to live in mental anguish myself. When do I get to remove the pain? I get it, I really do get it, don’t do anything that will hurt or devastate others. I just find it damn hard to care when I’m so far down that nothing matters. I am grateful to my psych though because he does everything he can to help me and to keep me safe.
So, as this blog is no longer serving any purpose I’ve decided to stop trying to update it and I’ll probably close it down soon. I know I have some regulars who read my posts and I thank you for doing that. I hope you are all going well in your fight against this horrible disorder and that long-term stability will be a reality for all of you.
The past six months have been busy, frustrating and painful. My physical issues have included a knee replacement, a gallbladder removal and multiple treatment programs for lymphoedema. Mentally and emotionally I’ve been through two bouts of hypomania, a brain exploding mixed state and ongoing depression with suicide ideation. Not what I’d call fun and I’m still not over these things but I’m trying.
When I had my knee operation I “lost” four days. I have no memory of anything that happened during that time. Family and friends say I sent them nonsensical text messages yet I can’t remember having my phone with me. My first recollection was of being moved to a physical rehabilitation hospital for a month. I was aware of my new surroundings, but my cognitive processes were still affected. I couldn’t read nor write, not even sign my name. I couldn’t concentrate on anything and found it difficult to follow directions in my exercise classes. Then, wham, the depression hit really badly.
I struggled through each day trying not to cry, often failing and sobbing during times spent in my room. The pain of the depression was far worse than the pain in my knee, but it was easier to let everyone think that I was just being weak about coping with the rehab exercises. I was very thankful that my psychiatrist kept in touch with me by phone as he was the one person with whom I could be truthful.
After being discharged, I attended more physio classes for my knee and it slowly started to improve. I wish I could say the same about the depression that still has a strangle hold on me. I see my psychiatrist weekly, which helps to control the urge to kill myself, but those thoughts are always just under the surface. I’ve tried to distract myself and to self-soothe by doing things I’ve always enjoyed yet nothing has helped. All my life I’ve read a lot but I still can’t get involved in a book. Similarly, I love (or did love) listening to music but that doesn’t interest me either. I don’t want to see friends or family even though I know that I’m becoming dangerously housebound. I hate that it has taken so long for the temporary cognitive impairment to ease and I’m reluctant to even think about having surgery on my other knee. I hate it that I’m so depressed. I feel physically and mentally paralysed.
A couple of months ago my psychiatrist suggested I try a very low dose of Lexapro (escitalopram) to see if it would ease the depression. I don’t do well on antidepressants; they always flip me into mania, but we hoped that such a small dose would help while not having any undesired effect. Fail! I started on 1mg then after 10 days it was increased to 2mg and two days later I was in hypomania. So that’s it for me and antidepressants. My psychiatrist has now suggested that I go into hospital and undergo TMS treatment. I’ve had Transcranial Magnetic Stimulation before with no success, but he tells me the process has been refined and improved so it is worth revisiting it. For the past two weeks I’ve seen another psychiatrist while mine has been on holiday and he also agrees TMS is worth a second go. I’m thinking about it. It’d be great to feel stable again and not to hide away crying under the bedclothes, but I’m not feeling good about a month in a hospital. It’s not so much hospital itself, it’s being away from home for so long. Away from my husband and my dog, away from familiar surroundings where I can cry when I need to (I hate crying around others) and hide away when I don’t want to see anyone.
I don’t know what I’ll do yet. Maybe my depression will miraculously lift and I won’t have to make a decision.
Some time ago I was asked to describe the symptoms I experience with restless legs. It’s important to know that restless legs can feel different for each person. For instance, I don’t get the “crawling” feeling that many others complain about but I do get the urge to keep moving.
The sensations come on quite suddenly. I feel the start of the problem about 30 secs to a minute before the symptoms become full-blown. They can start when I’m awake or asleep but generally happen when I’m awake. At first I feel an intense discomfort like my legs are about to cramp but they don’t. I have to keep moving them and the feeling is like the one you get in that microsecond between having your knee tapped to test your reflex and when your leg kicks out. It’s weird. I need to keep on clenching and unclenching my leg muscles, pointing my toes and turning my ankles. As the discomfort gets stronger I feel compelled to hit my legs with my fists followed by massaging. I have the urge to scream in frustration.
When do I mostly suffer from restless legs?
- during hot weather
- during long periods of sitting such as at the movies
- when taking certain medications for bipolar
- usually in the evening or night
- when my lower leg lymphoedema is bad
- when my compression stockings (lymphoedema) are overheating my legs.
What works to ease my discomfort? Mainly walking or using ice packs.
During hot weather I sleep with my legs uncovered and the airconditioner on. If I still have a problem I sleep with ice packs wrapped beneath my calves. During the day or evening I sometimes sit with my feet in a bowl of ice cubes and water. Icing my legs is definitely the best treatment for me. There is nothing much I can do if somewhere like the movies, I just have to leave and walk around outside. I’ve missed the second half of a lot of good movies!
Various psych meds I’ve taken have brought on terrible bouts of restless legs and I’ve had to discontinue. I’m not going to list the meds because everyone is different in how they react to medication. My only advice is to talk to your psychiatrist if you think a new med may be causing or exacerbating your restless legs.
My psychiatrist has prescribed a drug for me to use PRN and it helps all but the worst bouts. I don’t like taking any more drugs than I need so I only use this one if my other methods have not worked.
Onwards and upwards, downwards or circle…repeat, repeat. Instability is a horrible place to be. More often than not I can be found curled up in depression wishing the world would go away and take me with it. Everything is an effort. Trying to get out of bed is an effort, eating healthy food is an effort, maintaining “happy face” for my family and friends is an effort. All I want to do is cuddle up to my pillow and imagine I’m floating on a soft, fluffy cloud. I guess at least that part is positive — clouds are nice.
Recently I’ve had a few episodes of hypomania, always preceded by madly doing housework in the middle of the night and followed by the usual racing thoughts, fast and risky driving, agitation, starting many things I don’t finish and becoming argumentative. Mania can suck but hypomania often feels good because I’m doing something and I’m usually aware of it. During the latest episode I managed to get rid of 10 boxes of books that were cluttering my shelves, although afterwards I thought my culling had probably gone too far. The unfortunate result of hypomania (or mania) is that I crash into a deeper depression immediately afterwards.
No medication has been working for me. I say “for me” because that’s how psychotropic drugs are — what doesn’t work for me may work for you and vice versa. I’m not recommending nor condemning any medication. We all have to work with our psychiatrists to find the combination that keeps us stable over the long term.
The latest drug to be added to my medication cocktail is Saphris. I started off on 5mg and after a couple of months it seems reasonably promising. I hate the taste and numb mouth but those are small issues. My problem with it started when I went up to 10mg. I began sleepwalking, something I’ve never done in my life! I didn’t wake up until I crashed into furniture or doorways (I’m obviously not very good at sleepwalking or I’d go around obstacles haha). There’s other stuff too but not for this blog. My sleep was disturbed each night and it was worrying that I found myself outside on a few occasions. My psych took me back down to 5mg and I stopped sleepwalking.
Recently my psych invited my husband in for a talk. The invitation has been extended before but my husband has always refused to go. This time he came in with me and my psych explained various aspects of bipolar and the treatment I’m on. I thought it would’ve been helpful (I live in hope) but it’s made no difference to the way we interact or the way he sees my mental illness. He still thinks I have far more choices about living with bipolar than I do when majorly depressed, hypomanic or manic. Sometimes all seems pretty normal; average; stable, but then the wheels fall off and bipolar has you in it’s grip again. We’ve all felt that — right? None of us enjoy it and God only knows we wish it were different.
My psych is away for 6 weeks, a combination of conference and holiday. He’d hoped that I’d see my GP while he’s away as she has been involved in my treatment, but wouldn’t you know it she’s away for 6 weeks too! So he referred me to a psychotherapist who works in the same rooms. I’ve seen him twice now and he’s very nice. But he doesn’t know me so he’s going right back to onset of bipolar symptoms and, more upsetting, a long period of abuse. Although it’s upsetting it’s made it clear to me that something I thought I’d shut the door on is still very active. Somethings in my younger life I have managed to say “ok that’s finished now” but this one is still firing arrows into my chest and making my guts churn. I’m glad we are talking about this stuff and that I’m getting a different approach because maybe then I can finally find a way to move forward.
Finally words from a slack blogger!
Not only has typing been impossible but the ability to write by hand seems to have deserted me too. Usually I keep a journal, write point-form notes for discussion during therapy, write letters to penfriends and take part in a global postcard exchange via the web site Postcrossing. I have always enjoyed collecting journals and fountain pens and have taken great pleasure from the possibilities presented by each new page.
Where has this gone?
Partly it is a physical disability because my hands shake from the meds I take. I have been dropping things and stumbling too. My psych thinks Lamictal is the cause and my dosage has been decreased. However there seems to be a cognitive element too and I’m struggling with thought processes. Nevertheless I’m here and trying to throw a few words together in the hope that they make sense!
Another reason that I’ve not written over recent months is that I’ve read in other blogs/articles that people writing anecdotes about their illness are contributing to misinformation because what they say is not backed up by the presentation of available research. It’s hard to argue with that. I certainly write about my own experiences rather than presenting references to scientific studies, however I believe there is a place for both and that it can be a bit precious to claim that journal type blogs have no value whatsoever. I read personal blogs to feel connected with other people who have bipolar and how it affects their lives. If I read something about a medication with which people have had personal experience I may go looking for the scientific information afterwards. I’d like to think that visitors here do the same thing and I don’t expect anyone to just accept the experiences I’ve had and apply them to their own. I admit to being put off with the attitude I’ve come across but then I credit people who read blogs about bipolar with the intelligence to work out if the blog is worth reading or not.
I remind everyone that I’m not a scientist, psychiatrist, doctor or psychiatric nurse. I’m just an average person with bipolar.
There’s been a long delay in my blogging again, mainly caused by the swinging of moods, a merry-go-round of meds and the general see-sawing of life. As you can see I’m in the kiddies’ playground at the moment — some fun, some falling over in tears and a lot of stupid immaturity (at 55!). Read More »
Recently I’ve been switching between lows and highs within the one day. I’ve had Mixed State episodes a number of times where I can be hypomanic yet crying but this time I’m ultradian cycling. Ultradian cycling is where you experience multiple mood swings in one day. It is not officially recognised in the DSM-IV yet most psychiatrists acknowledge that it exists. In my case I’ve been depressed on waking, hypomanic by lunchtime, depressed in the afternoon and hypomanic again late at night. It is exhausting and it is interfering with my life so much. Read More »
I’ve been living recently with both depression and panic attacks but they’re not my friends, they’re my enemies. I have to fight them in order to function and gain some sort of normality in my life. The depression has been with me for a long time now, apart from one recent episode of full-on mania and time spent in a horrible mixed state, and it is proving to be hard to shift my mood. Because of this my psych has put me back on a low dose of Zoloft (sertraline). I feel slightly better after having taken it for a week and I’m hoping the improvement continues.
As for the panic attacks, Read More »
The week from hell!
My psych decided to risk the fact that Valdoxan might flip me into mania and gave me a sample pack to take for a week. He did a lot of further research before taking this step and, based on all the literature plus information from the pharmaceutical company, came to the conclusion that the risk of switching was minimal. I was happy to give it a go because it seemed like the pharmaceutical lifeline I’ve been looking for, so I grabbed the sample pack like my life depended on it and hoped, really hoped that it would kick me out of depression into the realms of normality again. Read More »