Pushing through the illness

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kirsten

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I haven't gone out at night for at least six months and I was starting to feel better before I moved home so I committed to going to a new friend's dress rehearsal for a dance show. It meant a lot to her and making new friends is really important for me at the moment.

I saw my therapist this week and she told me that I was depressed because I was suffering the consequences of not pushing through my illness over the last six months. I had been trying to keep up with ordinary life initially but it was really making me anxious and depressed. She told me to give myself a break and be kind to myself at the time because I was being too hard on myself. Now that the months have passed and I've been isolated, she's telling me differently, that I should have joined a hiking club, or whatever, to connect with people despite the fact that I was having seizures and changing meds. So obviously that's what she wants me to do now. Go out despite the physical consequences. Live an ordinary life under extraordinary circumstances.

Last night was my friend's dance show and I went. I got to sleep at 1am and woke up at 8pm, but I could only take my night meds when I got home, which was at about midnight. This morning, somehow or another, I had a tonic clonic seizure. I haven't had one during the day for ages. I have been exhausted all day and I have a black eye. And I think it'd be a bad idea to push myself to go out tomorrow as I have started to do every sunday afternoon, because I have to work on monday, aside from which I don't want to parade my black eye around to everyone. If I followed my therapist, I would go out on sunday and land up too ill to work on monday. Going out last night did kick me into a better mood, but going out tomorrow will just make me down again. There just doesn't seem to be a good way of coping long term with being ill. How do we live a good life when we're having seizures long term?

What are your thoughts?
 
Kirsten,

You're doing the best you can with what you have been dealt. You know your body and limitations better than anyone, including your therapist, so listen to your inner voice. You need rest so you can work, but at the same time you need friends so you won't be depressed. A fine line. If you feel like going out on Sunday, go. But don't overdo it. Do it one day at a time- that is what my therapist always told me.
 
Hi, Kirsten - I can relate to what you're going through. For me it is enjoying a Saturday afternoon with friends and working out with them, and it's something we have done for years (well before seizures became an issue). Working out is very important to me; it's part of who I am. Something about the hyped up atmosphere seems to get to me (ie. cause nocturnal seizures) almost every time I spend the afternoon with them: the physical competition, the intense personalities of some of my friends, the loud music . . .

We need contact with friends and to have some fun in order to feel good, but sometimes we do have "consequences" when we do have some fun. It can be a very fine line between doing the right amount and overdoing it. And what makes it really tough is that line can shift a little to one side or the other depending on how we feel, how stressed we are feeling, how much sleep we've had, alterations/mistakes with medications, etc. Try not to let what just happened get you down, although I know it is difficult not too. Perhaps 1 AM was just too late, and that is what put you over the edge. Maybe you and I both need to take our social commitments and tone them down. For me, I will see if things go better if I meet with friends but not work out with them, and for you: start your "re-immersion" into social life more gradually and adapt the social event to your needs:hugs:
 
To put what Cint said differently, make a judgement about how you feel that particular day. If you are feeling like you might have a seizure stay in. Try not to stay out late. On the other hand, if you feel yucky, but haven't been out for some time, try going out. For me, working a moderate low stress schedule, helps me to feel better physically and mentally. The worst thing for me is when I'm alone by myself all the time and doing nothing (kind of like now).

I've gone to work, gone hiking, and traveled while feeling pretty bad. I had seizures too, but it's usually not a disaster. However, I have given up on the bicycle, because it seemed to set me off all the time. I'm pretty much afraid of swimming, but do it occasionally when there's a life guard or someone else around, and if I'm feeling ok. I don't party.

Sometimes it's hard to tell. You might to the right thing sometimes, and the wrong thing sometimes, but that's ok.
 
I'm actually upset at your therapist for thinking that your epilepsy is something we can "push through" the same way I get upset when charitable organizations say that they are going to "cure" epilepsy if I give a donation.

Epilepsy is not like a virus that can be "cured" nor do we "push through" it. I've been aware that my seizures might create boundaries that I wouldn't have otherwise but I need to discover those boundaries & work within them, not push through this as though it will be cured & over soon.

Also, your therapist telling you that you that you're too hard on yourself sounds like the numerous people (everyone from friends to neurologists) that try claim that I'm just being negative & being more positive would help my seizures. I have nothing against being positive but I often see remarks like that as a way of blaming me for my seizures. Don't let anyone (professional or otherwise) do that to you.

Personally I'd say get a new therapist, hopefully one who has epilepsy or has experience in working with people who have it.
 
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I had actually ended my post with 'maybe I should change therapists' but then I deleted it in the hope that it would be more constructive to keep an open mind, so it's interesting that you (Epileric) have suggested I get a new therapist. My therapist has three other TLE patients, which is hardly a large sample size, and she was comparing me to them, telling me that I was the only one out of all of them that was depressed so the problem must lie with me and not the epilepsy. She told me she had cancer patients who were terribly ill and they weren't depressed or isolated either. So I left the session feeling I'd been shamed for feeling the way I did and for not socialising when I was too sick to. Now I do have the energy for some socialising and so I have been getting out a bit, but she is telling me that now is not enough, and that I should have made that move when I was bedridden, and that my feeling isolated now was my own fault.

I'm the first person to look at my behaviour and make changes where I can. That is my habit, and my therapist has had five years to observe that behaviour in me. I pointed that out to her and she agreed, but said I had had a behaviour relapse six months ago, and that is why I wasn't taking positive action the way I have been for the last five years.

Also Cint, you say, 'You've done the best you can with what you've been dealt,' which is my feeling, too. My therapist has said that of my mother, who was medically negligent and is the reason I have epilepsy today, but she distinctly applies that principle to my mother only, and not to me.

Another issue about consequences is that my therapist's long term boyfriend died in November. She made a change to my anticonvulsants that began the whole seizure problem in the first place, and then jumped off the planet, ignoring all patient contact without telling us when she'd be back. I kept thinking she'd be back in a week or two, and so I kept waiting and suffering with the meds change. I eventually called a neurologist in December, but it was on the day that his office was closing for Christmas holidays, so I had to wait till late January before I got any help. At that point, it was too late to make a minor adjustment to my Epilim, because I was reacting too badly to it after so long on too high a dose. If she'd told us that she was going to be gone for two months, I'd have sought alternative help straight away and would probably not have had the last six months of illness in the first place.

I appreciate all your feedback about coping with day to day life. It does need to be one day at a time and I do need to develop enough value in myself to make those social occasions fit in better with my meds and seizures. And active seizures are a tough thing to cope with, so making mistakes about living with chronic illness is totally okay, and acceptable, and normal.

I also need to dump my therapist, though. I guess I'll have to settle on a new one before I drop this one but I think my next session, which is next week or the following, is going to have to be a confrontation, for the sake of my own personal development, and also as a way to honour myself and value myself. There is a good psychologist who has CFS in my area, but I also need a psychiatrist, so I'll have to have a look at what my medical aid provides for.
 
Wow, I think any such therapist that compares a client to other clients and uses that as an excuse to not give value to their issues is an awful therapist. Basically your therapist is saying you're not the norm (determined by other clients) so you're wrong and I believe that thinking like that is contradictory to good therapy.

Never mind the fact that they are using other clients to determine what is normal for your condition rather than actually researching your condition. If she were to do that she'd realize that there is a much higher likelihood of depression if one has epilepsy.

Epilepsy, anxiety, and depression are all common disorders. It is therefore not surprising that the conditions coexist in a significant number of patients. Indeed, some authors estimate the lifetime prevalence of depression in association with epilepsy to be as high as 55%.
Click to expand...

http://jnnp.bmj.com/content/76/suppl_1/i45.full

Also it is rather inappropriate to discuss other clients, even if they are not mentioned by name or discuss what they don't have (as opposed to what they do). It's very hard for me not to get angry at your therapist.
 
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She's supposed to be a specialist on TLE and moods, so why she seems to be ignoring what she knows is beyond me. I have been Googling and I did find a couple of psychiatrists here who don't have the 'neuro' label but have expressed their interest in epilepsy and mood. Like my psychiatrist, I'm afraid I suspect we just make interesting textbook pages, and a true interest in treating us doesn't necessarily follow from that.
 
My Mom is in the end stages of cancer. She is more fragile than I have ever seen her. Yet she goes out with the women at church for weekly coffee, goes walking 5 days a week for exercise, is active (very) at her church, Etc... but she never compares me to what she is able to do. She has become over protective of me lately for the FIRST time in her life (I am 50). She doesn't want me to go walking (which I like to do in the mornings) anywhere without someone, She litteraly tells me what I should and shouldn't do to stay safe. While my therapist says she understands my Moms Thoughts, she also wants me to live my own life the way I want but take cautions if I do go out and about. She has also never compared me to another client. That breaks HIPPA laws in the US and they can be fired and never get a job as a therapist again. She herself has had me sign paper work about it and so have every dr. I have seen. Its the law here that they have to inform you. :)

One thing I do if I am going out at night is pack my meds in a snack baggy so I can take them as needed. I just dismiss my self to the ladies room to take them.

Best wishes!!!
 
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