2016

Since I last posted I have returned to university. I have settled in well, my department are very supportive, my course is difficult but its a means to an end and I think it will get more interesting as I progress. University has given me a sense of purpose i have lacked since my mum died, when my mum died I was left directionless. My role had to been to look after her and I had to adjust to not putting another person first. University has given me a routine and sense of belonging. It is a difficult course and I do struggle with the workload but ultimately I would rather be here doing this and get closer to my goal of studying medicine down the line.

It is very difficult to put into words the way I feel about my mum because I’m not sure how I do feel. Initially there was the intense devastation but life continued and I still had this huge pain and I found myself unable to deal with it head on. I don’t know if I am doing the right or wrong; university is distracting for instance, I don’t actually think I will ever get over it but in daily life there is something which numbs the pain a little by means of a diversion.

The pain and huge sense of loss remains. My mum was essentially the only family I had. How does one adjust to being without a family? I have no one to go home to at night, no one to make sure I actually do get home. Its a very odd thing. I have a good set of friends but ultimately they can’t change what has happened. If I talk about what happened to my mum I can get upset if I think about it too much as opposed to being matter of fact. It’s confusing. To say you miss someone is a strange thing. Normally it is a transient thing, you expect to be reunited at some point. How do you adjust to missing someone constantly when “missing someone” doesn’t quite convey the permanence of that loss? It can’t be reversed, there’s no place to visit, any questions will remain forever unanswered.

I was angry with my mum for a time, as I felt she had abandoned me even though I knew that she knew never wanted to die. I was angry with the situation I was left with and the people I was left to deal with as a consequence. There are a lot of people I could blame over what happened to my mum, by the cause of a chain of events- and to a degree myself, I questioned my relationship with my mum, hoping I was a good daughter to her, hoping she knew how loved she was and intense guilt over past arguments. But blame won’t bring her back or make me feel any less bereft.

Circumstances have changed in that I now do have my mum’s ashes which I intend to scatter with a friend in India. I hope there will be some semblance of closure but deep down I don’t think I have even begun to deal with the bereavement process in reality, merely on the surface. I am horrified by the process of cremation, I was horrified to be given the bag which contained my mum’s ashes. I couldn’t cope with having them at home. It made it all real. I hope I find the strength to scatter them. The ashes do not feel as though they are my mother, it is not like I have my mother. After the conflict over me possessing my mother’s ashes, I thought I would feel something. But ultimately her body wasn’t her.I had put myself in such a mindset to deal with the possible reality of not scattering her ashes that I don’t know how to deal with the fact that it is actually going to happen.

 

 

Bereavement – seven months on 

I have been thinking about what I want to do with my blog for a while. I don’t know if blogging helps me, I don’t think I have anything new or interesting to say.

The past 7 months since my mum’s death has in general passed quickly. I have struggled with the grieving process and ended up having problems as a result. I’m now waiting for a referral to a specialist psychologist to help me come to terms with the loss of my mummy. 

The loss is overwhelming. It often feels like I might drown at any given moment as I am barely keeping my head above water. Heartbreak is something you hear about but until you experience it you don’t truly know what it is like. I literally do feel my heart is broken and it will never be put back together again. There’s a lot to come to terms with; I miss my mum more than I can put into words, my life changed  irrecoverably, every now and then I am struck with sheer panic and distress of how I am going to continue. 

On a day to day basis: I often get comments about how well I am doing, how I still smile and laugh. Often the smiles and laughter are genuine but occasionally it’s like playing a role. I feel at some point or another people are going to get bored of me grieving so I should pretend as much as possible to be like my old self, whatever that was. 

Life is linear and you can’t go back, whether I like it not this event will have changed me. I have gone from being someone secure in the knowledge that I am unconditionally loved by my mother to now feeling any love I have in my life is not certain or forever. I feel I am at going to end up pushing people away. I feel when my mum passed away a part of me went away with her, I feel this emptiness on a daily basis. 

Recently I’ve had hospital admissions and these were more stressful than I expected. One of the issues I think is on a subconscious level in that my mum died on a respiratory ward and it’s been distressing to be in that environment. I’m afraid that like my mum I may never go home again when I end up in there. This is further exacerbated by certain doctors who look after my asthma being quite blunt with me. Things got very stressful and I cracked. I’m now stuck on massive amounts of steroids which I feel helpless about because I’m too scared to tell them how fed up I feel about the fact I’m on all these steroids and things still aren’t right and haven’t been right since April. 

When I used to end up in hospital I always felt safe because my mum was there for me, she knew what my wishes were and she was always there to comfort me when I was in pain and struggling to breathe. During my recent admissions, intensive care have been involved and this can be scary at the time and I really feel I don’t want to be alone at that time. I was worried about if I was put to sleep if I would ever come back round again, or if my wishes would be respected. About 6 weeks after my mother passed away I was in hospital and requested certain things in the event I’m unable to say what I want to happen only this was shot down on the grounds of my age and current health. 

I have agonised over whether my mum should have been subjected to the resuscitation attempts because it was so invasive and effectively futile. Yes they got her back briefly but then lost her again and I can now appreciate something I couldn’t at the time. That is – she was frail. I wanted them to try to bring her back because I didn’t want to lose her and I knew 100% she wanted to live. But the thought I have now is that ultimately watching her die like this been distressing to me and possibly caused her more suffering than she should have endured. On the other hand it’s a comfort to know everything was done to try and bring her back and there aren’t really any what ifs. 

  

The hardest one to write.

I don’t know how I can say this. It still doesn’t feel real until I tell someone or someone asks me about what happened. How can something hurt so much but leave you numb at the same time?

My mum passed away 4 weeks ago, during the evening of 5th November 2014. She was 61 years and 3 weeks old.

I cannot accept that I will never see her again, never speak to her, never hug her again. My life feels so empty. I feel I have lost everything. My mum was everything to me. I don’t think I can put into words just how much I love her and how much it hurts that she has gone. It’s a pain like no other. The one person who loved me unconditionally in the world has gone. I feel so alone. Every time I think about what happened I feel sick. It is like someone has torn something out from me but I can’t see from where. I want to think about her constantly but it hurts too much if I think for a second too long and the tears in my eyes build up.

I don’t think I will ever forget my final moments with her. I honestly think this will haunt me forever. I remember it so clearly.

Mum and I were both admitted to different hospitals around the same time at the start of October. I was in hospital for erythroderma, a complication of my eczema and my mum was seemingly in for just her usual case of chest infection. Throughout my week in hospital my mum and I kept in touch and she was progressing well. It seemed that by the time I would be discharged she would be too. However things suddenly changed; she was becoming unresponsive, being sick, confused. At first they queried a seizure but the EEG showed there wasn’t. On 17th October I was rang by an ITU registrar asking me various questions about what my mum was normally like, I thought nothing of it until I arrived on the ward to see her. I was taken into a room with him and nurse to be told the EEG was suggestive of Encephalitis, inflammation of the brain. He then said they would let my mum go if she could no longer breathe for herself and not intubate as they felt she would not recover. This was very distressing. However mum started making progress slowly. From opening her eyes to saying hello to having short conversations. All through this time the doctors kept reiterating that she was very ill however while I knew this, I also knew my mum had overcome a great deal in the past 18 months so I thought this was just another battle she will win. Sadly she didn’t.

A few days before she died she was having a lot of problems with extremely low blood pressure, to the point they were so concerned they asked me to get there ASAP I made a 40 mile taxi journey from uni to get there. I was told her lumbar puncture didn’t show any viral cause of encephalitis. So they continued treating her for it but the neurology team were involved to see what else could be causing her to be so very unwell, for example vasculitis or mini strokes.

The day before mummy died, she was the most lucid she had been in a few weeks. I’m so glad we had this day. I was so happy when I arrived on the ward to be told by a nurse that she had been having a proper conversation with everyone that day and that she was asking after me and to bring in lots of rice pudding in for her tomorrow as she was getting through so much of it. She asked me about uni, I gave her a back rub, we talked about her favourite foods etc and she said she wanted birthday cake as she wasn’t responsive when it was her birthday so I said would bring some in the next day. I left feeling relieved.

The next morning, the day she died, I got a phone call saying they had many problems during the night with her blood pressure and that doctors had spent a lot of the night with her. I was told to come in for a chat with the doctors. When I arrived I was told the only thing that was raising her blood pressure at all was the blood transfusions. However mum was suffering so much because she had no IV access at all and they kept trying and trying and would not listen when I said she needed proper IV access like a PICC line. They finally put in a PICC line around 6-7 hours before she eventually died. Much too late.

I had discussions with the consultant who was looking after her about the situation who said it was still unclear what exactly was going on. I saw the ITU consultant who said if there was a reversible cause they would intervene however not for the time being and she will continue to receive active treatment on the ward. There was also a neurology meeting about my mum which after she died I was told didn’t come to any firm conclusions.

It got later and later, I kept thinking I would go home after the next set of observations but then that time would come and I didn’t want to leave. She had a severe hypo early on in the evening which was treated swiftly and so I decided, I had this feeling that I must stay with her tonight so that if she had a bad night again she wouldn’t be alone. She was trying to cough something up but just couldn’t. The nurse tried suctioning her but couldn’t get it. She took some more observations and my mum’s observations were the best they had been all day, she then left us and mum was still making this gurgling sound, I was trying to talk to her saying hello and asking how she was. Her voice was quite weak and she repeated hello and told me she was okay. I was sat next to her and thought something strange was happening. She had gone quiet and her eyes were just staring into space. I decided to clean her mouth as she was still sticky from the glucose gels they had given her for the hypo she had earlier on in the evening. I dabbed a wet wipe around her mouth and thought she would fidget at me doing this but she did nothing. I thought this was odd and went to ask the nurse about this fully expecting her to reassure me that there was nothing to worry about.

The nurse came back into the room with me and tried to wake my mum, tried to feel a pulse from her neck and couldn’t find one. “I don’t think she’s breathing” I felt all the blood in my body drain to my feet when she said this. It couldn’t be happening. The alarm was sounded, crash team on their way. The staff started CPR, chest compressions and I stood there in the corner of the room refusing to leave until I was eventually forced to when they were checking if she had a shockable rhythm.

I left knowing all was lost. I knew I had lost my mum. The nurses were saying don’t preempt it but I knew. I knew from all the times I had been in hospital that it’s very unlikely that a person in cardiac arrest can be brought back. I sat in a room with a nurse, waiting and waiting. Someone from the crash team arrives and says we have got her back, she needs helps with her breathing and we will most likely be taking her to intensive care. This is important as they said they would not do this, they did more than they said they would and so I know they did absolutely everything they could have done to bring her back. The cruel twist is that they lost her again not long after this tiny glimmer of hope. And they could not bring her back this time. They came in and all they said was sorry over and over again. I couldn’t believe it, just complete and utter shock. An hour ago I had my mum and now she was gone. How could this be? I went in to sit with her and she could have been sleeping. I kept thinking her eyes were moving or that her fingers were twitching. When I gave her a hug before I left it felt weird. It was so hard to leave her.

After she died, there were a few issues about establishing a cause of death, the doctors weren’t happy about putting encephalitis down on the death certificate as encephalitis doesn’t have a high death rate although it is a serious condition and she was quite young relatively speaking. The consultant was waiting to hear about the outcome of the neurology meeting that had took place the day she died. As mentioned it didn’t bring up anything concrete, suggestions were vasculitis, mini strokes, a rare ischaemic brain injury of some sort but nothing specific. I didn’t want her body to be subjected to any further suffering via the way of the post mortem. The consultant felt that as the EEG was consistent with encephalitis they could put this down as the cause of death after all. He was very nice and answered all my questions and welcomed me to phone him anytime even six months down the line if there is anything else I wanted to ask. I have a niggling doubt about the cause of death but it makes no difference to the situation and I didn’t want a post mortem to happen so I have to accept it.

The funeral was very hard. It went very quickly and felt rather hollow. The funeral did not give me any closure and only caused me distress due to various factors but most significant was when my aunt who had caused me so much distress during my mum’s illness, took me without a word about what I was about to see so that I couldn’t make a choice, my last memory of the funeral was the seeing my mother’s coffin go into the fire. This is deeply upsetting and I want to forget this and keep trying to. I could have dealt with the funeral if I had not seen this.

There’s now so much practical stuff that has to be sorted out and it is so very stressful. I don’t know how I am going to do it. It’s so scary. So with all this stress it’s affecting the way I am grieving for my mum, I don’t know what is the right or wrong way to grieve. Everyday that I visited my mum I gave her lots of kisses, told her how much I loved her and told her all this again and more kisses before I would go home. I truly hope she knew how much I did love her, I knew I had to keep telling her just incase something happened and I wasn’t there. I knew she loved me, that’s one of the things I am certain about in my life. The way she loved me was so special. She did so much for me in my life, she was my strength because she was the strongest person I knew. And despite how upsetting that night was, I am so very glad I was there. She didn’t die alone, she was with the person who loved her unconditionally who she loved back unconditionally. And this is a very small but definite comfort. I was there.

I now think about the future we won’t have together, she won’t be there to see me graduate, if I get married or be a grandmother to my children. My mummy loved taking pictures, there are thousands in a box we have. They used to seem like a lot before, now, they don’t feel nowhere near enough. I don’t know how I can be on this planet for the next 40, 50, 60 years without her. She left me far too soon and I keep thinking how could she? I know she didn’t want to die and didn’t want to leave me but I feel so cheated.

I loved and love you so much, mummy. I really hope you are still here somehow even though I can’t see you. Rest in peace, the most amazing mummy.

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UVB Light Therapy, apathy and general stress

UVB light therapy is a lot, a lot harder than I expected it to be. Today, things came to a head. My skin has basically got worse while I’ve been having it; so painful, dry, red, peeling etc. I don’t feel human. I was told it can make your skin worse initially but for some reason I didn’t feel it actually would. I am about 11 treatments in now, I was really upset today about how my eczema was compounded by the fact I was feeling unwell in a general sort of way i.e. feeling like I was about to pass out. I told them what was happening and they got a doctor to see me who said that this treatment dries skin out and mine is indeed very dried out. I was asked if I wanted to continue with it or not. But was told if I didn’t then quite frankly I will be looking at ciclosporin/azathioprine as discussed previously to get my eczema under control. He said I really needed to keep on top of moisturising like 4/5 times a day which I’m not sure how I am going to manage. If anyone has ever been coated head to toe in thick heavy ointments then they will know how horrible it feels especially in this hot weather. I have agreed to continue with UVB for now and they’ve said that instead of leaving straight after a treatment they will cover me in ointment before I leave the hospital to combat the drying effect of the treatment. I’ve been told roughly 12-15 treatments in I should maybe feel a difference, this at the moment feels like complete rubbish as I have had 11 treatments now. I have been told I will likely need 30 -35 treatments so I’m basically a third of the way through. I hate standing in the machine with the door closed and counting the minutes, seconds in my head and feeling the heat on my skin. I think if I was allowed to take music or something inside the machine with me I would tolerate it a bit better. It’s just turned out worse than I expected, I’ve been putting off UV therapy for a long time due to some non specific fear of it then actually thought it didn’t sound too bad, but the reality I’ve found is far worse. I really hope I am still on the treatment in the next month and not packed it in and feeling better. I’m feeling really negative despite being told it can (and usually does) make a huge difference to patients’ skin. I’m just feeling right now that it’s not going to work and I really sincerely hope I am very wrong about that.

Mentally I’m not doing so great at the moment; becoming very tearful, apathetic, stressed, low mood and tired. I feel like I need constant reassurance at the moment which I don’t really get because I don’t really tell most of my friends how I really feel so I’m left feeling chewed up by it all which is so pathetic. I’ve had two consultations with GPs, first one went awful and was left inconsolable due to his insensitive and inaccurate remarks like how I am losing all my skin- that really hit a nerve and basically telling me my health won’t improve. Second consultation with a different GP was about some care coordinator thing I’d been selected for due to admissions risk which is a load of rubbish as I won’t go in, discussed DNR of all things and he decided it would be a good idea to resuscitate me in the event of whatever to which I was thinking ‘well I’m glad you think so’. But other than that I felt like I could bring up some of how I was feeling and he thought it would be a good idea to send me for bloods to check my thyroid for whatever reason. I still haven’t gone for this blood test as I’m really more needle phobic than usual at the moment for some reason.

Apathy is something I am really struggling with at the moment, I see all the mess of paper etc on my desk and my heart sinks and I go to lie down because I just feel I can’t sort it all out. It feels impossible. I’m sleeping really badly at the moment and it leaves me with no motivation for the day. I’m having some really low thoughts at the moment and I’m not really seeing a way through it all. I used to be this really determined person and now I really am not. I miss who I used to be.