Tag: endometriosis

Looking for an app to track mood and pain

I am seeing a psychologist at the pain clinic for a short number of sessions. When I was first sent an appointment to do therapy I was really worried and almost angry about it, feeling I’d had enough of therapy in other services where I couldn’t trust the therapists or the community team and I couldn’t risk making myself vulnerable again. On top of that I was sure the therapy would be from the point of view that nothing is wrong with me, the pain I have is unnecessary and my fault because I’ve rested too much and not pushed myself enough, which is an attitude I’ve encountered too many times on so-called pain management courses. Amazingly it has turned out to be a very different experience.

I don’t tend to find pain is terribly related to my mood, beyond the fact that I’m more anxious and low when the pain is worse. It’s also connected to flashbacks but I don’t quite know how. We identified in therapy today that I find awareness of my body very difficult. Maybe that is common in personality disorder and certainly in dissociative identity disorder.

I want to try tracking my pain and my mood together to see if this may show up any links I’m not aware of. I’ve done the two separately before as part of learning to pace activity (I did not find the recording gave me any new insights) but I’ve not really done the two together, not over an extended period anyway.

Phone apps exist to track your mood but I’m looking for an app that tracks mood and pain. Ideally I’d like an app where I could record a numerical score for my pain and my mood every couple of hours through the day, with space to make a brief note if something very significant happened (for example if I have flashbacks or an event triggers traumatic memories or dissociation).

Have you used an app like this and did you learn from it? Any recommendations would be very helpful.

Ginny xx

Advertisements

That should have been me

Do you ever feel that someone else’s place or circumstances should have been yours? That you really wish you could swap, or take for them what they are going through? I am not talking about good things, more about difficult things. So many times, when someone I care about is suffering, I’ve wished that I could take for them what they are going through. I guess that much is natural, when we care for someone, particularly with parents and children – I’m not a parent but I imagine loving parents would probably willingly take suffering themselves to spare their children’s suffering. Weirdly, I get these feelings with people I don’t really know. I can get really strong feelings that I should have been in their place, that it should have been me, not them.

When I was in the hospital for my operation last week, there were several of us on the ward having similar procedures. Lovely NHS blue curtains round the beds are fine for privacy in visual terms but do nothing to stop you overhearing what is going on, much as you really try not to! So, I ended up gathering that the lady in the next bed, about the same age as me, was having the same operation as me for suspected endometriosis. We both went into theatre and both came out and the doctors came round to see us to tell us the outcome. I’d gone in expecting to be told I had extensive endometriosis and that it had grown across my bladder and potentially other organs. I’m single and I do not want to have my own children. The lady next door to me had a (from what I saw) caring, loving husband or partner and I gathered that they were at the stage to consider starting a family. She didn’t know what to expect in the op. We both came out. I got told that there was no endometriosis. She got told that she has severe endometriosis, it has grown through her other organs, it was so severe they could not remove it in that operation and will need to do another more complicated operation, and if she wants any chance of having children it’s very unlikely and she would have to go through freezing eggs and having IVF. She was so astoundingly brave, talking to the doctors and talking to her husband / partner, I was stunned, but she has this shock and loss to face of likely not being able to have children.

Now – apart from acknowledging the fact that I have distinctly too big ears and need to stop being such a nosy moo (bring ear plugs next time!?) – I instantly felt that my place and hers should have been swapped. I should have been the one to have the endometriosis. I’m single. I don’t plan to have children, for so many reasons. I knew that already. I expected endometriosis. I’d not really have lost anything if I had it. She has a partner and they love each other and probably wanted a family and she’d have been a lovely lovely mum.

I didn’t know her and I’m sure I’ll never cross paths with her again but I cried and prayed to God, that should have been me. It should have been me, not her. It hurt.

Frequently, I get this strong feeling that it should have been me. It happens with friends, where I really wish I could, and feel I should, be able to take on pain that they are going through and go through it in their place. It also happens with people I barely know. Possibly it’s connected to times I dissociate, or my feelings that I “shouldn’t have been me”, shouldn’t have been who I am, I’m not real, everyone knows my thoughts and intentions are something other than what I think they are (something bad) – but this is different. Feeling I should have been in the other person’s place when they are suffering… that I wish I could take it on for them… that I want to take it away from them (but it’s more than that)….

Is that a typical Borderline Personality Disorder feeling? Or typical of Personality Disorders in general? Do you ever experience these feelings?

I’m sorry this is a badly written post.

Ginny xxx

 

 

Post op confused.com

Post op confused.com

I’m sorry for such a long silence. On Thursday last week, I had my small operation. It has taken me a few days to get back to the point of being able to write again. Anaesthetic and I are not the best of friends so the first couple of days after the op were not very nice. Now it’s good to be back! I’ve missed you all and I’m looking forward to getting caught up, both here and with your lovely blogs. I still have pain but it’s manageable.

The operation did not go in the way expected and it isn’t medically bad, but it is confusing.

The plan of the operation was to do a laparoscopy and laparotomy – look inside the womb, look outside the womb and at the surrounding organs, remove the endometriosis and insert the coil, all under general anaesthetic. (I don’t want to bore people going into too much detail as I’ve posted on this several times before, however you can read more about it here , here and here.)

I had been told for around the last 2 years that I have endometriosis and that this is what has caused the last 10 + years of heavy, really long and painful periods, bladder problems, constant pelvic pain, back pain, amongst other things. So I was expecting a big benefit of the operation to be removing the endometriosis and that therefore my symptoms would reduce or go away afterwards.

When I saw the consultant right after the operation, he said that they found no endometriosis at all. I don’t have it. It was the wrong diagnosis. They cleaned out my womb (eeek!) but found nothing wrong with my womb or the fallopian tubes. There were no cysts and no growth of cells outside the womb or onto other organs like the bladder, which they had previously been sure there would be. They did insert the coil.

I was stunned. Of course, it is really good that I don’t have endometriosis. From the reading up I have done over the last couple of years (for example, here), I know what a terrible condition it is. On the other hand, this outcome has left me really confused. It has left me without any specific explanation for my symptoms. It means I do not know whether or not I am going to get the improvement in my symptoms, especially the debilitating pain, which I had so much hoped for after the operation.

Also, I felt really stupid, fake and that I must be imagining it all. I shouldn’t have had the operation – yet again I’m a fake – my mind was screaming at me. The doctors were kind and they said it wasn’t my fault and wasn’t wrong that they did the operaiton. It was their decision to do it and my symptoms had worsened to the point that they needed to do it, if only for the exploratory purposes of finding out exactly what is going on. Endometriosis growth typically does not show up on any kind of scans – the only way to find out 100% for sure if / where it is present is to operate.

It’s a good thing they have checked out the situation. If it was essential to look inside, I almost kind of wish they’d have done it years ago rather than giving me all different kinds of medications potentially to treat the wrong thing. However, I do understand some women find that whatever the exact problem is, medications like the Pill and tranexamic acid can manage the symptoms and that’s how it’s treated, even if you can’t remove the root cause (kind of weird to try to get my head round).

Everything feels very confusing. My head is getting noisy at times with all the thoughts of being fake, having imagined it, having deceived people, specifically having deceived people into helping me and treating me. Fraud, fraud, fake, you made it all up, liar…. the voices say. When you have that struggle in your head already, having a load of “unexplained” physical symptoms that are horrible in themselves but are hidden and not able to be proved (you can’t see them on a scan, for example) is horrible and really triggering.

The doctor said that there could be a problem with my ovaries. I’m not sure exactly what problem he is thinking of. I was still reeling from the “no endometriosis” news and was still confused and foggy from the anaesthetic. I will have to check that out with my GP. The doctor also said that some women do have really heavy painful periods simply because of hormonal problems.

The coil I’ve had fitted should help with that. It’s definitely a plus that they have been able to insert the coil. All being well, I can have it for 5 years before it needs to be changed. It is good that it was done under the anaesthetic because for various reasons, some to do with the effects of the sexual abuse when I was a child, it is too difficult for the doctor and painful for me to fit it without anaesthetic. The doctor explained that the coil can take 3 – 6 months to settle in. (Seriously? 3 months? What’s it up to for goodness sake – is it popping out to buy a new 3 piece suite at Ikea? 😉 Still…) Then, it’s hoped that I will have no monthly periods, or that they will be much lighter.

This means the next step is to wait to see what happens in the coming months with the coil, and to find out what may be the issue with my ovaries. In addition, I will potentially need some more investigations. They may need to look further into what is causing my bladder issues, since it wasn’t endometriosis growths. This could be part of my fibromyalgia, or the neuropathic symptoms.

I’m also at the start of being investigated for a potential connective tissue disorder. I’ll leave that one for another post as it’s rather a long story, but I have just found out that it can contribute to a lot of gynaecological problems, as well as joint problems and pain.

Thank you so much everyone for your support in all your lovely kind comments leading up to the op. I do feel guilty now after you gave me all that support and it then turns out to be not at all the diagnosis that it was thought to be! I’m sorry. I feel really bad for posting before having been so sure it was something it wasn’t. It was what the doctors had told me it was, but I still feel bad. Your encouragement and friendship still really means a lot whatever the ultimate diagnosis and treatment is. I’m thankful.

Ginny xxx

[Image sourced from memecenter.com – with thanks]

Op tomorrow – and a short silence

Here we are. It’s my op tomorrow.

Surprisingly for me, until I left work today I was not feeling nervous. Then my colleagues who knew about it were all so supportive wishing me well. ..and ah yes up popped the anxiety again. Hallo there 😉

Tonight I have several things to do – check my transport for tomorrow, to see if there’s an early enough bus or if I need to get a taxi, get some groceries as I may not be able to get out for a few days after the op, text my friend who is very kindly bringing me home on Friday, call Dad, tidy up at home, pack, get myself ready….eek. But plenty to think about which is probably a good thing!

Thank you so much for your support, messages, wishes, prayers and caring. It really means a lot at the moment. I never expected to find so much friendship through blogging and I’m hugely thankful.

I imagine I won’t be able to post for a few days whilst I’m recovering. I’m sorry in advance for the silence. You are in my grateful prayers and I’ll be back in touch as soon as I can.

Ginny xxx

Gynae update – almost op time

Warning gents (or anyone for whom this may be TMI! )- look away now if you wish 🙂 !

It’s almost op day.

My surgery is scheduled for this Thursday. (It was postponed by one day because of the junior doctors’ strike.)

On Friday I had the pre-op assessment, where they check things like your blood pressure, that you don’t have particular infections,  or any conditions they need to be aware of which may make anaesthesia more risky. Thankfully all went fine.

This afternoon, I’m going in for an MRI scan. I was just about to get on the bus to the hospital when I got a phonecall to say the scanner was broken and my appointment was canceled! I really put my foot down. I need to have the scan before the operation. I questioned when they booked it (after an A&E doctor and I had kept chasing!) the fact that it was so close to the operation and was assured it would be fine. After the severity of symptoms I’ve had there was no way I was going to risk the operation getting postponed because they didn’t do the scan. I don’t usually insist for things like this but today I did. They were not forthcoming at first but I’m now to go at 4.30pm and wait however long it takes for another scanner to be available. I’m just thankful it’s being done today so the op can go ahead.

On Thursday I have to go in for 7.00am. All being well I’ll stay in overnight and come home the next day. I’m so so much hoping they can do what they want to and it fixes something. They are doing exploratory surgery, they are hoping to be able to remove some of the endometriosis and they are going to insert the coil. Depending how bad the endometriosis is they may not be able to remove all of it (they think it has probably grown over the bladder because of some of my symptoms and if it has grown through the bladder they will need to do another operation). I’m really hoping they can remove what they need to and that having the coil helps prevent it returning (I’m not sure about how effective they think that’ll be) and makes my periods lighter. Taking the Pill made no difference and I have still been bleeding for 3 weeks at a time but because the coil releases the hormones in a more localised way in the womb, it’s hoped it’ll be more effective. I was not too keen on having the coil but things have got so bad now I feel I have to try it. They are not willing to consider any other treatments til I’ve tried it. I’m kind of feeling trapped by that but I am also very thankful that after 10 years + of problems, a thorough investigation is now being done.

This past month I’ve really not been great physically. I had 4 days off work because of the pain and bleeding. I could only stand up for a few minutes at a time because I was so dizzy and in so much pain. I’m still having only 2 weeks between periods and they are lasting well over the supposedly usual week. My fibromyalgia and arthritis are bad at the moment too but the gynae symptoms are having a big impact. So Thursday can’t come fast enough!

I’m grateful that I got referred to a consultant who is taking things seriously at last.

Right, time to head off to the hospital and pray that everything is in order for the scan now!

Ginny xxx

 

It just doesn’t stretch, whatever I do

I’m scared I’m so close to everything falling apart. Financially. But it feels like everything.

I got an automated voicemail message from my landlord telling me I’m to call them urgently to discuss “ways we can help you to pay your rent”. They had closed by the time I finished work so I have to wait til tomorrow to call them and find out exactly what it’s about but I know it will be about my rent arrears. I doubt they will be “helping” me pay, somehow! I know the fact of having to call them doesn’t instantly change anything but I’m really panicking.

I was struggling already today, feeling very sad after a difficult 1:1 therapy session on Monday, a friendship having broken down and a few other things. After getting this message I just wanted to crawl under my duvet, cry, shut off, everything and nothing…and the urge to cut is very strong but I’m trying to resist.

Nothing is working out. I got into arrears last year when I lost my job, wasn’t paid notice and holiday pay as expected, and my housing benefit didn’t come through for 10 weeks. Working part time I’ve been entitled to some housing benefit but my claim has been messed up, suspended, altered back and forth from start to finish and I’ve had more periods of weeks with no money coming in. I’ve been paying my rent, with great difficulty, but not able to clear the arrears.

Now they have stopped my housing benefit because my salary has increased by a few pence per hour. This leaves me unable to meet even the tightest budget. I do not have enough money to cover the bare minimun of rent, council tax, bills like electricity, telephone, prescriptions, travel to the hospital, some access to the internet and food (let alone any other expenses like buying clothes when needed, any longer distance travel, or socialising). I’ve cut back as much as I can, especially on food. I don’t make proper meals, just toast, cereal and cheap snacks. It makes me feel awful (plenty of guilt for bad fattening food) but I can’t afford anything else.

I know the arrears are my responsibility and I have to pay. I feel panic and guilt every day over them. I know that in the past when very unwell I made poor financial decisions and was irresponsible with money, which has contributed to why I don’t have savings. So has the fact that I’ve been too ill physically to work full time at several points in the last 10 years.

Part of what is so upsetting is that I am now doing all I can but I still can’t stretch to cover the tightest budget or see any way to change things. I am pushing myself as hard as I can to keep going to work. It’s very difficult mentally – and I’m sad that it is so hard to do it but that is the situation I have to accept right now. It’s very difficult physically too. The pain I’m in from the fibromyalgia, arthritis and so on has been increasing since I started and each day it gets harder to do certain things (going up and down stairs, staying on my feet for lengths of time, etc) and if it carries on it’ll get to a point the pain is too much or I can’t stand long enough or something like that. I hoped if I kept pushing I’d get better at dealing with it but that isn’t happening and instead everything is flaring up.

I really want to keep working. I’m blessed with kind and happy colleagues, a caring employer, a creative environment, varied days, lots to learn and so many good things. Psychologically this job is so much less stressful than the legal secretarial work I couldn’t cope with. There’s so much that should be positive that I don’t want to waste.

However I’m in a situation that I just can’t cover day to day living going forward let alone clear the arrears I owe. It shouldn’t be a reason to give up but when things seem to be falling apart anyway, it’s harder to keep pushing through the physical pain and mental struggle to keep working.

I feel really trapped because with the rent situation alone I think I’m going to end up losing my flat. I know the landlord, being a housing association, has given me more time with the arrears than many other landlords would. A private landlord would have thrown me out ages ago. I know that’s another way I’m fortunate. It’s my responsibility but I don’t know how I can or will be able to pay.

Even if I could clear the arrears  I don’t know how I’d pay the rent going forward. If I can’t,  I don’t know where I’d live because I have no money for a deposit to rent privately. If I went back to renting a room as a lodger my mental health would crash downhill but at this point I would have to be grateful for anything. If I lose this place and end up homeless I’d lose my job. I might anyway if my physical health keeps going down.

It’s horrible thinking even if I get evicted and lose my flat, I don’t know how I’ll change my situation. It’s horrible that trying as hard as I can to do the work I can, I’m not able to live on what I earn and I’m assessed not to be entitled to any benefits despite this. I want to work as much as I can but I’m actually in a worse situation, it appears, than if I were not working at all signed off sick. My rent and council tax would then be covered by benefits. Not that that would help with the arrears but it would at least cover rent going forward. The system says it shouldn’t happen that you are worse off working than not, but it does. I’m actually put into a situation where doing the most work I can means I’m left with not enough to live.

I was referred well over two weeks ago to an organisation that would help me sort all this out and talk to my landlord. I was supposed to have been seen by them within two weeks. I chased up as I hadn’t heard, only to find out they said they had not received my referral from the support worker. It had got lost in the secure email system somewhere,  ironically. It has been sent to them again but now they are not likely to see me til after my operation.

I have no idea what to do. There are so many “if”s and a spiraling whirl of consequences that make it feel that everything’s already falling apart.

I don’t want to make out I have it harder than the next person. I know so many people are in this situation. I know I have to deal with it. It’s a time I wish someone could catch me when I’m falling like this but I know that’s nobody’s responsibility. I’m scared and everything’s already unravelling inside.i suppose I have to try not to listen to the spirals in my head until at least after I’ve spoken to my landlord tomorrow.

Ginny xxx

I’msorry for getting so behind

I’m sorry for getting so behind on responding to comments and visiting other blogs. I owe several replies and I’m not ignoring you, I’m sorry. In the past few weeks I seem to have been almost constantly under the weather with colds / flu and my fibromyalgia has really flared up now – I’m quickly fatigued, have a lot of pain, glands inflamed etc. Together with the endometriosis it isn’t a great combination. I spent most of yesterday and today sleeping (I wasn’t well enough to go to group therapy yesterday) apart from some attempts at cleaning up my flat. I feel so useless right now.

You are in my thoughts and I’m very grateful to you for still reading when I’m so rubbish at keeping in touch. I promise I’ll get back to you as soon as possible and I’m sorry for being useless.

Ginny xxx

Not being there

In the past few weeks I have been struggling more physically with a lot of pain, exhaustion and several viruses one after the other not helping. I’m learning slowly to not get frustrated or panicked when there are things I just can’t do at the moment. This is a very slow process of learning about what I can do – it’s been over 15 years now since my physical health conditions started. It still makes me feel very useless when I compare myself with other people and see how much less I seem to manage to achieve day to day than they do and comments that bring it home, deliberate or not, hurt.

However the hardest part is feeling that I can’t be there for other people (friends, family, people I work for, and so on) in the way I would like to. At the moment I manage to work part time. Usually after work I am exhausted and dealing with too much pain to do anything else. I get behind on simple things like housework. I’m behind on replying to comments and messages on here – I’m really sorry all the more because I am grateful for the time you take to stop by and read and comment and you are all far more supportive to me than I manage to be to you. I had to stop most of the voluntary work I used to do and I feel I’m not there for my friends or family in the way I’d like to be. Most live a long way away and the journey can usually be too much, plus I can’t even write or telephone as I’d like to when I’m very low physically or mentally.

I really feel like I’m selfish and should push harder (though I know I can’t) and that I’m really failing in friendship. Even in my dreams – which have been really disturbing lately – there seems to be a theme of not being able to help people or watching bad things happen to people and screaming out but not being able to stop it and the not being able to stop it comes with a sense of horror and judgment on myself that lasts quite some time after waking.

I try to take courage from remembering that it’s not grand accomplishments that are necessary and even little actions done with love and care can be meaningful even if we don’t see how they are at the time. I don’t have a high powered or even full time job but in the work I do I can still do it with dedication and care and going that bit further to help those I’m serving (literally, since I work in a shop!).

But when it comes to not being able to be present in the way I should be for others in relationships – I’m not giving the time or the help I should in practical ways – I feel I’m failing. However much I care for someone, if I can’t do the practical things (visiting, writing, helping and being there when they need it) then aren’t I really failing, from their point of view?

I know we don’t earn a genuine friendship any more than we earn God’s love. We aren’t loved by God because of what we do or because we have earned it or made ourselves successful or good enough. We are loved, still in our weakness, because His nature is loving. The more we admit our need for Him the more He fills us with His love. The good we do is the work of His love through us and every little act and prayer we offer is this love, gives this love to other people and gives love back to Him. “We love because He loved us first.” He even says it is by this love we will be known – people will say, “see these Christians, how they love one another.” In their work with the poorest people, Mother Teresa’s nuns made it their aim not to begin by preaching but by care, love and selflessness in their actions. If someone asked them why they acted as they did, then they would speak about the Love that led them to it.

Actions aren’t what make us good or acceptable people, though I can certainly tend to feel that. They are the fruit of being loved and wanting to love. But what if I can’t do the things that are needed and expected in friendship, that bring care and support to the other person and show to them that I care? In the past I’ve even ended relationships because I’ve felt so strongly that I’m not a real friend because I can’t be there as the other person needs. Recent ways relationships (one or two in particular) have gone wrong because (I think) the other person doesn’t find anything good in the relationship and thinks I need too much, make me think this even more.

Perhaps it’s something to discuss in therapy group.

Ginny xxx

5 Things – update

I’m sorry for the late update. Yesterday took a rather unexpected turn. If I tell you one thing to be thankful for was the nice A&E doctor, you’ll start to get the picture! :-0 🙂

I fainted at work and had so much pain I went to A&E. I wasn’t sure whether to go or not especially as this is now chronic, but work pushed for me to go.  It was the worst pain yet. It was probably the right choice to go as if things had got even worse later at home I’d only have been even more stuck and maybe ended up going anyway. As it was, they were able to give me a stronger dose of analgesics which have started to control the pain so that is really good. It took about 4 hours before I could walk slowly without feeling so dizzy I thought I’d faint again. I got discharged home in the late afternoon.

Roll on the surgery…

Still, I promised to update with the 5 things I’m thankful for, so here goes:

1 – That I have a caring manager and colleagues who really did seem to care more about my health than the trouble my absence would cause on a busy Saturday. How different this was from all my previous experience.

2 – The particularly caring doctor at A&E. It matters so much to feel listened to and that a plan is put in place to manage and cope better with symptoms when they can’t necessarily be cured immediately.

3 – The friend who most unexpectedly was in the area and came to bring me some grocery essentials and stayed to talk a while.  Someone caring enough to go out of their way to give practical help and give me company made a huge difference.

4 – A sea of beautiful daffodils spotted on the way to work. Pretty things are close at hand if you force yourself to look.

5 – My hot water bottle and my blanket!

Ginny xx

 

 

Today I will find good

Ouch. The pain is really bad this morning and I’m exhausted, anxious and don’t know if I’ll get through the day at work.

Today I am deciding to find as much good as I can. Today I commit to notice and be thankful for 5 good things around me. Today I commit to hold onto hope. Today I commit to find every small way I can to go that little bit further and bring help and happiness to others.

I’ll post the 5 thankful things later today.

Wishing you good today.

Xxx