Wednesday, 17 December 2014

Turbulence

 Turbulence
A state of conflict, confusion, agitation or disorder. 
I think that adequately describes the past few weeks.
Isn't it a funny old thing, life?  It keeps you on your toes, adds twists and turns to test you and keep you from becoming too complacent. It makes you realise now precious this gift is, life is to be treasured and respected. Don't squander it and let it pass you by unmarked because one day you may look back with regret and wish you had grasped the nettle, taken risks, followed your gut and heart and truly lived.
I am thankful that I feel so far I have managed to live a good and full life, that is not to say there isn't so much more I would like to do. December is and has been since my mum passed a month of memories of a wonderful vibrant life lost but which left those remaining with many memories to hold on to. Mum really did know how to live and make the most of life and fought bitterly to the very end to hold on to it too. 

The year, on mums birthday funnily enough, my husband had a heart attack right in front of my very eyes. To say it was something of a shock would be a mere understatement of the facts. It was horribly frightening for him, as he thought his number was up and also for me trying to help him and comfort him. I am enormously thankful that the girls were not downstairs but in bed at the time and so didn't witness what happened. 

As it turns out, with hindsight, it appears he has in actual fact suffered from two heart attacks, the first one was 10 days previous to the one I witnessed on the 6th December. It occurred whilst at a friends house down South ~ the paramedic at the time decided the episode was due to low blood pressure and dehydration. Not satisfied with that answer we visited our GP who decided it wasn't that at all but oesophageal spasm, brought on by stress and excess acid, which could apparently mimic symptoms of heart attacks.  This answer seemed to make sense and so we were reassured and went home, although Dave continued to have chest pain and tingling down arms for a further three days.

So initially, when Dave started to get the pain again we thought, uh oh - another oesophageal spasm, breathe through it and it will pass. Then, when Dave was writhing in pain and clutching at his chest, struggling hugely with the pressure on his chest and the tingling down his arms I decided to ring 999, this definitely didn't look right.  The care that followed was incredible. I would like to give a huge shout out and thank you to each and every person along the chain who came to our assistance and made a very stressful time less so. From the woman on the telephone who answered my 999 call and was fabulous, she kept me talking until the paramedics and ambulance arrived ~ which was very swiftly. Our treatment from start to finish throughout all departments was amazing. The A&E team, Assessment Ward Team, Cardiac Ward and Cardiac Catheter Team, various porters & Dave's Consultant were all incredible, friendly, calm, reassuring, supportive and thorough. This hasn't stopped either ~ Dave had a call from a cardiac nurse after discharge to check everything was going well, he has twice weekly rehab group after Christmas in outpatients and Consultant appointment in the New Year too. PLUS a none emergency helpline for any advice or queries we may have. It is when you have to utilise the NHS like this that you fully appreciated how lucky you are to have access to this medical care. I would like to extend a grateful heartfelt thank you to each and every person we dealt with during this time.
Since coming home we have had to adjust and re-assess our lifestyle and work.  With no income currently coming in life is not easy, we are being frugal and tightening our belts to get through. Dave, sadly had to let his apprentice go as he can no longer supervise and provide a job for him. Instead we are having to look at his work (self-employed, own business) and adapt it so that he can continue within the new restrictions he has been given via the hospital once he is allowed to recommence work. For the moment his business is on hold ~ just dealing with phone calls at the moment explaining the situation and diverting work as it comes in or postponing it until we are up and running again. Yep - I said we, I am now donning the cap of Dave's assistant and general runner and when back at work Dave will be running it all from behind his desk, organising and delegating the work as the jobs come in. 

Other things have had to change too; diet ~ out goes fatty foods, salt and alcohol, in comes carbs, oily fish and wholegrain everything. A progressive gentle exercise regime and many medications added to the mix mean Dave is feeling quite unsettled at the moment but in the long run I think it will make a huge improvement to our lives. 

Cabin fever though, is starting to set in but taking Dave out for a drive isn't quite what he needs to reduce stress as he finds my driving frustrating to say the least. In the past he has only been a passenger of mine when inebriated. 4 weeks until he is able to drive again ~ I have a sneaky suspicion he is counting down the days.

So, December has thus far been rather a turbulent and emotional affair ~ however, looking forward to 2015 we hope that we can adapt and find ways forward to suit us as a family and keep our heads financially above water as well as emotionally and physically. The girls are emotionally and physically exhausted, ME doesn't respond well to emotional stress. We are hoping to have a drama free New Year and one where the girls and Dave can rest and heal and slowly build up their strength.

Thank you to friends and family who have sent such warm and supportive messages and to the few who took the time to ring or email us asking if we needed anything and that the offer of help and support was there just for the asking. Your offered strength and humour which has bolstered us and helped us get through the toughest days ~ you cannot know how much we appreciated that.

So until 2015, I wish you all a Merry Christmas 
and a very happy and healthy New Year.
 x~X~x

Tuesday, 2 December 2014

Talking About Mental Health

If you read my blogs you will be aware that as a family we all suffer from various forms of mental health issues. In the past I have talked about our journey and feel this is important to share and keep talking about it, the obstacles and changes, help we receive and challenges because it may help just one person who is experiencing something similar. Perhaps if sufferers and their families talked more about it then maybe we can garner understanding and help for those needing it. This time I will be just giving you an overview about where we are now but specifically talking more about Keisha as an awful lot has come to light just recently.

Myself and Dave have ongoing issues with depression. Sadly the girls all suffer from anxiety and with the exception of Tara, depression too. As parents we initially blamed ourselves for this and it was only through therapy that we were able to realise that it wasn't due to anything we had done but instead due to an accumulation of  issues arising from the twists and turns our lives had taken.

I manage my depression without medication due to sensitivity to many of them making me unable to take many forms of antidepressants. The ones I don't react to make me far too lethargic and disconnected, even on the lowest dosage. so I try to focus on keeping a positive mind and breathing exercises. When it becomes too much for me to manage on my own I go to a therapist for extra support. Dave on the other hand finds taking fluoxetine helps him enormously, he is given regular reviews via our GP regarding his medication and dosage and it is a long term measure until the situations we face become more manageable. 

I am so thrilled that finally, after a 10 month waiting list Tara has been given a CBT therapist to help her manage her anxiety. She has bonded incredibly well with her allocated therapist and is working with him to achieve her long term goal of being able to go to and from town by herself on a bus and also to walk around the shops alone. This is a huge deal for her as being ill with ME for almost a 5 years has meant that she has become socially isolated as she is mostly housebound.

Tasha is under a CAMHS psychiatrist who has prescribed her anti-depressants and this is really helping.  She also has severe social anxiety and has had a one to one therapist for a couple of years but sadly he is now moving on and we are waiting for the allocation of a new therapist to take his place. CBT is not possible for Tasha as it involves structured work and due to her ME and cognitive issues she finds this too much and too stressful right now. Instead she is going to receive one to one therapy to discuss coping techniques. She has also found art therapy and photography incredibly useful, she receives visits once a fortnight from a peer mentor who is studying art therapy at university. Together they experiment with various art mediums and on good days she is taken out in her wheelchair to take some photographs.

Keisha has had long term issues which we could not really understand when she was younger. We put down much of her behaviour to the fact that she had been looked after an awful lot by my parents as Dave worked away and both Tasha and Tara had numerous health issues from babyhood which meant I was frequently in hospital with one of them for a week or two at a time. I was lucky to get some input from a charity who sent someone to the house once a week for a couple of hours to play with Tasha and Tara so that I could spend one to one time with Keisha. We spent these precious hours doing art or going to the park but it went by so quickly and felt so infrequent that I truly felt awful and neglectful at not being able to be with her as much as I would like. I know I had to prioritise and I wasn't able to have the choice to stay at home with her ~ life and illness made the decision for me. So we had to make the most of the time together that we had. This meant she became very much a daddies girls, when he came home she would always make a b-line for him and snuggle into his arms with a huge smile of contentment. We ended moving away from my parents in Lincolnshire to Derbyshire to be able to spend every night with Dave and be together as a family.  It meant some juggling but we always remained very close to my parents who visited us, or we visited them every fortnight and we all spoke on the phone daily. Keisha has also always been exceptionally bright and questioning but with that also highly strung and emotional. Health visitors and GP's advised us to keep her stimulated, that she was bored and needed pushing. We tried but this never really resolved anything. We coped and managed to get by but Keisha was bullied at primary school which affected her deeply along with my mother suffering with cancer all her childhood, so she became used to seeing the inside of hospitals from a very young age by either visiting her sisters or her Grandma. I do wonder to what extent this has impacted on her mental health.

When Keisha hit puberty that's when it all started to become worrying. We found out that she had been self harming and our initial reaction was anger ~ we were devastated she had hidden this from us and not felt able to talk to us about what she was going through. We manged to get her to see the doctor who referred us to CAMHS but also told us that this was a surprisingly "normal" teenage response to puberty and the emotional turbulence it causes ~ how can self harming ever be considered acceptable? We calmed down once we knew that she wasn't trying to kill herself but instead letting out her pain via cutting. CAMHS took her on and we started with various therapists, unfortunately none of them really gelled with Keisha and understood what she was experiencing enough to effectively help her. So this time of her life became hugely unstable and difficult for her. To make it worse my mother died and both her sisters were diagnosed one after the other with the chronic illness M.E. which made our home life far from normal. The combination of grief, loss and the incapacity of her sisters meant she felt more alone than ever. From have close bonds with her sisters and going out together and always having each other she had only herself and her friends at school ~many of which it later turned out, were toxic relationships. It is no wonder that she struggled and became more depressed, anxious and unhappy.

Finally though, we managed to get referred to the CAMHS psychiatrist and that is when things started to take a turn upwards. She seemed to really see Keisha and her issues, listen to her, understand her and work to try and help her. However, my relationship with Keisha became hugely volatile during this period of her life. We would have many a run in as I tried to control the situation and make the best I could of an abnormal home life ~ I became too over-protective of her and this meant we would fall out over what she could or could not do. We would have conversations and make agreements which she would then deny ever making or even ever having the conversation with me ~ I would blow up as felt she was trying to manipulate me and she would get upset thinking I was lying. She became very emotional, angry, volatile ~ it was like walking on egg shells being around her because you never knew when she was going to blow up. Her psychiatrist diagnosed her as having anxiety and depressive issues along with autistic traits and she was given anti-depressants which seemed to help a little. However, she still remained hugely emotional flying from one extreme to the other. It wasn't until after she opened up to her psychiatrist, who then fed back to us, that she had been a victim of rape and abuse that it began to make sense. Again, as parents we felt absolutely awful, we had failed our daughter because she hadn't felt able to tell us what had happened to her, instead she had held onto it for months on end before finally telling her psychiatrist. Following this revelation we spoke to the police who were absolutely fabulous and gave us the number to call for rape crisis ~ now called SV2. We immediately rang but it took almost a year to get allocated a specialist practitioner to help Keisha work through everything she has experienced and help her deal with it and learn to live with it. In the time following the assault Keisha had to drop out of College due to the severe Post Traumatic Stress Disorder episodes which was such a huge decision for her as she was working towards promising A-level results but we all felt her mental well-being was far more important than qualifications.

She has only been at SV2 for a few weeks and the first of those she underwent thorough assessments to confirm her previous diagnosis and see if they were still relevant. We now have the official diagnosis of her having; Generalised Anxiety Disorder (GAD), Panic Disorder, Post-Traumatic Stress Disorder (PTSD), Major Depressive Disorder (MDD), Dissociative Identity Disorder (Multiple Personality Disorder) and Autism Spectrum Disorder (ASD). It is now with this great specialist that she has forged a good relationship with that we feel she can now, finally, move forward with her life and learn to live with the hand she has been dealt. Having these formal diagnosis has been a huge help, it explains the issues which caused so much disharmony between myself and Keisha ~ knowing what we know now is helping us support her and make sense of everything in the past. We are now moving forward towards a much healthier path and relationship, I am having to learn to let go and hold back the control freak in me. The hardest part of being a parent is letting you child fly on their own, I am sitting on my hands and watching her do just that. I cannot express in words the pride I feel watching her grow and learn to face her demons. Our relationship is now better and stronger and I am still learning to try and not "fix" but just listen when she talks to me. I feel such gratitude towards her new therapist who knows precisely what Keisha needs and how to help, already her work with Keisha is making a marked impact and I know that this will continue and her life will become better and less fragmented as time goes by.

Also, a very important part of Keisha's recovery is due to her Jack. He is her boyfriend who knows everything that has happened to her and he understands completely how to make her feel safe and secure when she is having an anxiety episode or flashbacks. He has helped her so much that she has been able to accept an apprenticeship in hospitality and they have both moved out and into their new home together. This has all been with our support and that of her therapist, we feel it enormously important that she is able to take control of her life and have her own space where she is not surrounded by illness and memories of what has been in the past and instead to create her own special safe haven. Keisha has written a blog about her journey and how mental illness affects her and she urges others to seek help if they feel they are in a similar boat ~ you can read her blog here.

I can only urge others experiencing mental health issues to go and seek help. There are many different avenues for you to try but whatever you do, please don't suffer alone and in silence. There are links here which may help you to find the help you need.

We are supporting "Time To Change" to help end mental health stigma, you can read about it here.
Remember, you are not alone.
x~X~x