Respite time should be used for whatever we need at the time : in the past we have taken short breaks away, have been to a spa or have had a rare night out while Joshua is away in someone else’s care. This time, as my cold was at its peak, I needed to rest while Joshua was being looked after elsewhere. I came home after dropping Joshua off and I had a hot bath and then I went to bed and slept for 2 solid hours. I came downstairs in my pyjamas and dressing gown and stayed that way all evening. my husband wanted us to go out for a meal, to make the most of our ‘night off’, but I was already doing that, in my own way and I knew that I needed to stay warm and indoors, so we settled on an Indian takeaway, which I enjoyed very much, as I had hardly eaten all day.

Joshua had watched me packing his overnight bag on Friday night and so he probably expected to be going to his previous respite provision, but he definitely recognises the bag and the packing process. As it was his first overnight stay with the new staff, I packed him so familiar toys that he likes, such as his guitar and iPad, even though they have plenty of toys there. He had to be there for midday, and so we had time for our weekend Tesco shop first, which  went well. As I had half an hour to kill after that, as we had whizzed around the store in record time, I took him to a cafe for some orange juice and cake . He enjoyed both and he waved at all the staff and other customers too while enjoying his treat.

We drove to the respite provision on a new route and so he looked puzzled as to where I was taking him – Joshua watches where we are going knows familiar routes. But when I pulled into their driveway, he grinned and said “oooohh” as if to say ‘oh there we are, that’s OK then’. He got out of the car and happily went indoors, heading straight into the lounge where there was a new young lady curled up on the settee. He went to sit next to her and was curious as she did not respond as he expected. Even though he was only staying overnight, he arrived with two bags of stuff, which I put in his downstairs bedroom. I did not hang around, but said my goodbyes and left them to it.

I managed to wait until 8.45 before phoning to see how they had got on and it sounds as though he had enjoyed a good day,  and he was tucked up in bed already. The only altercation that they had had was when they had tried to give him a shower and he had objected, as I predicted that he would. But other than that, Joshua seems to have had a good time.I will collect him again at midday today and that will be the next milestone under his belt, 24 hours in his new respite provision. For my point of view, it could not have come at a better time, not so that I could enjoy wild all-night parties, but so that I could sleep when I needed to and to try to kick this cold into touch, so that I am fit for a busy week ahead.



For the last 5 weeks, I have been dashing  around juggling hospital visiting, a busy time at work and our home life. I have been spending all of my days off plus at least another weekday visiting Mum and so it felt very odd to be at home yesterday, on my Friday off. I began sneezing on Tuesday night and that was joined with a sore throat and earache by Thursday, so now I am in the midst of a cold, which means that I feel lousy but more importantly, I have to stay away from Mum, as I cannot risk infecting her while she is so ill. My head knows that is the case but my heart was pulling yesterday, as I had not seen her since Tuesday. We heard that she had felt really unwell on Thursday and so her limited texting, had almost stopped altogether. So yesterday I had to be patient: I had to wait for Mum to reply to my texts or for my sister to arrive as a hospital visitor to report back and in the end both came around the same time and it was with relief that I heard that yesterday was a better day than the one before.

We have been spoiled with technology, as in the old days, pre-mobile phones, you had to ring the ward and they would wheel a telephone to the patient, if you were lucky but more likely, you had to visit to get news of the patient. But we now have email and a whats app group to spread updates throughout the family, which is a much easier way to communicate than to have to telephone everyone after visiting, which is exhausting, time consuming and inconsistent. But Mum was not well enough to update us these past two days and she cannot receive wifi where her bed is in the ward, so that even if she was feeling well enough to send emails, they do not send until she has the benefit of one of our hotspots. I did try calling the ward for an update on Thursday night but nobody answered the telephone and I know from experience, how busy the nurses are on Mum’s ward, so I did not let the phone ring, unanswered, for too long.

I like to know what is happening with my loved ones at all times, so today I will rely on my Aunt who is visiting to update me on Mum later today. I will also be wondering what is happening with Joshua as he has his first overnight stay at his new adult respite service tonight, as he will be staying there from midday today to midday tomorrow. I will call them tonight around 9 pm for an update on how he is doing, but then I will have to leave them to it until I collect him the next day. I will work on the basis of no news is good news there as they have my contact numbers if they have a problem or need me to collect him early. Whereas yesterday with Mum, I felt that no news was bad news when she was not responding to our texts as I imagined that she felt too ill to bother with texting. In both cases, I am going to have to let go and wait patiently to be informed, which is a skill that I need to work on for the future.

Trigger Happy

I think that I might have put a jinx on the sunny , warm weather and blue skies that we have been enjoying lately! This morning it is cold and wet, so Joshua will not be going to school in his shorts as he has been doing all week. Yesterday I sent an email to school to advise them that as heat was a key trigger for Joshua’s seizures, we are entering a difficult period for him. The 6th form at school are housed upstairs and it gets very hot there, with limited ventilation and outside space.

I asked that Joshua is kept as cool as possible by removing his epilepsy helmet and his boots, splints and socks too, when he begins to overheat this summer. I am confident that the risk of seizures is worse than the risk of him falling and hurting his head, as his seizures are less violent than they once were and he tends to be seated for them these days. Joshua rarely wears his helmet at home, only when he looks to be brewing a seizure, so it tends to be a precaution that is typically used at school and at respite. I send Joshua to school in his shorts on sunny days, so that his long, thin, white legs and nobbly knees are on show.

The last time I can recall Joshua overheating badly was at the school prom last July on a really  hot, sticky evening. Joshua was wearing his suit, including a waistcoat, and as he got hotter, he would not allow the staff to remove his jacket. When we arrived, he had a high temperature and so immediately I stripped him of his jacket and waistcoat. I removed his helmet and boots and we took him outside where there was a breeze and I waited with him, while my husband went to buy some Calpol. We sat in the cooler bar together and our droopy son gradually recovered and soon he was dancing the night away and we were the last to leave the party.

On holiday in sunnier climes, Joshua is most likely to be found either in the shade, or more likely, in the comfort of an air conditioned building. He is not a sun worshipper and has pale freckly skin that would burn easily if given the chance too. He will not wear a sunhat either, from being a baby, Joshua would not tolerate anything on his head. He wriggles away from his helmet everyday, and it only stays on because if the secure chin-strap.

So now that we have made these hot weather precautions, that has successfully scared the sun away. But should the sun decide to put in another appearance before September, we are all ready for it!

Sharing & Caring

Part of Mental Health Awareness Week is to get people to think and talk about mental health issues, so that it is no longer a taboo subject. I feel strongly that it is not something that people should suffer in silence or be embarrassed about. The taboo will not go away if sufferers stay at home and do not tell people how they are feeling, so that their friends, family and colleagues can understand their behaviour and possibly help them to feel better. You may feel that it is obvious when you are feeling low, I certainly do, but then you realise that most people are so wrapped up in their own lives and problems, that they have probably not noticed how you are feeling or behaving.

We all see our friends, family and colleagues in a particular way and so they will not be looking for you to act differently. So I always feel that I under perform at work when I am low: I feel indecisive and I lack confidence, but while the change is obvious to me, I am told that I am still performing. It is just that to maintain that level of workload, takes supreme effort and is exhausting, but I still keep the same high standards, so the cost is to me personally, rather than for my employer.

As a sufferer of depression, I feel that I can often recognise the signs in others : the sad, empty eyes , the slow pace of talking, the negativity in the way they are thinking , the inability to make decisions and the lack of enthusiasm for life. I recognise these symptoms, because I have been there myself, many times before. As I understand just how lonely that feels, I try to make an effort to reach out to fellow sufferers and to take time for them. I was aware that within our Coffee Morning at school, they were certainly parents with mental health issues. While I am not qualified to attempt to diagnose or fix anyone, I set up a group there where our parents can come and discuss their mental health with other parents, in a caring, non-judgemental environment. After the first meeting, last Summer, some parents told me that it was refreshing to come to school to talk about themselves, rather than their SEN children and that they felt able to say things that might be awkward amongst other groups, but that they were confident that we would all share and understand their perspective, without judging them as parents. That feedback validated my decision to launch this group as I could see that it fulfilled an unmet need.

I have also been trained to become a Mental Health First Aid Champion at work and so we are raising the profile of mental health in our workplace. It has now become an agenda issue at our weekly team meetings and today I am hoping to extend the meeting by an additional 30 minutes, in order to give us more of a focus than usual. I am aware that not everyone will feel comfortable with this initiative, but hopefully as we start to do it more, it will become easier and more natural and as colleagues in a small business, we will begin to look out for each other more in the future.

Just Be There

I saw a brilliant cartoon yesterday to sum up how I would like friends and family to support me during one of my lows : it showed two cartoon characters and one asks the other if it is OK? The sad looking one says ‘not really’, so the friend asks ‘do you want to talk about it?’ and again gets the same reply , ‘Not really’. So the friend does not push it, does not leave it there, but sits back to back to its friend, just to know someone is there. When you are depressed or anxious, you cannot always talk about how bad you are feeling – I know that I get fed up of hearing the sound of my own voice on occasions, as the negative voice never shuts up in your mind, being asleep is the only respite from that voice. But there can be real comfort in knowing that someone has your back, literally in the case of this cartoon.

Friends have asked me in the past, how can I help you when you are low? That is exactly what I have asked for, just be there, quietly and show me that you care. That might be by dropping me a note or text, that does not require a response, but that simply shows that they are there and that they care. Poor mental health is a very isolating experience and so, while you do not wish to be crowded or put under any additional pressure, it is helpful to not feel alone, even if it is impossible to find the energy, or words, to respond with a text or letter back.

I have written frequently about how isolating it feels to have a child with special needs, then if you add in the isolation of having poor mental health, then many suffering parents struggle to get dressed and get out of their own door, so that becomes a vicious circle. Even when I am depressed, I have been able to force myself to get up, get Joshua off to school and get myself  to work. That has not always been easy, when going back to bed has felt like a much more appealing option, but it has, in the long run, been my salvation. It is exhausting carrying on as normal when you are suffering from poor mental health, as it takes real effort to smile and ‘be normal’ and concentration to be able to  be productive. I am able to function at work when I am low, but I need more time and reassurance from colleagues that I am doing things well enough, as I am so self-critical, full of doubts and indecisive. I have been told that my work does not suffer when I am low, but of course, I do not believe that.

So if you have a friend who is struggling with anxiety or depression, and might be pushing you away by turning down your invitations to meet for a coffee, I would urge you not to give up on them. Perhaps you could try a different approach, send them regular texts just telling them your news or any funny stories to distract them or perhaps, rather than trying to get them to come out with you, maybe turn up on their doorstep with their favourite cake, to either eat with them or potentially leave for them to eat when they are ready. While they may not be able to respond to your extended arm of friendship at the time, they will appreciate it and, in my experience, it will help them along their journey of recovery. If you back away and withdraw from them, then you are simply confirming what they already believe about themselves, which is that they are not worth knowing or being friends with, so be persistent, but be patient too, and in time, your friend will come back to you.


Wonder Woman

This is Mental Health Awareness Week – a nominated week when we are encouraged to both think and talk about our mental health. I am very aware of my own mental health as I tend to be one of two extremes : I am either happy and full of energy, as I am at the moment – thankfully – or I am depressed, lacking in energy and self confidence. I do not vary much from day to day, but I will have at least a year in one state and then that is followed by a similar period in the opposite phase, making me rather like Jekyll and Hyde. People who know me well will be anxious about my mental health as things are hectic at the moment, with work, home and Mum being in hospital and now receiving treatment. I keep being warned to take care of myself or not to overdo things and I was also told that I was doing too much.

I know that these comments are well-intentioned and I know that they are simply worried that I might trip over into the next phase of my mental state. But in many ways, I am fortunate that this busy time has fallen when I have the energy to respond to the challenges that I am facing and when I am able to multi-task, as that is another of my abilities that I lose when I am low.

I know myself well know, after years of dealing with these highs and lows, and I am resigned to riding the roller-coaster and of making the most of each phase. I try to protect my mental health by talking about it and by resting when I need to. I have learnt over the years that I cannot control the change of my mental state;  so logically it  would make sense for my brain to react when it is under pressure, as it is now, when there is so much on my mind. But it does not seem to work that way, in fact it will probably survive these assaults, then something insignificant might just tip me into a new darker phase.  I am not waiting for it to happen, I am always hopeful that I have put my depression behind me once and for all, by changes that I have made in my life, but if it does come ,I know that it will not last forever and I know how to deal with it.

But in the meantime, I am grateful for the extra energy, confidence and clear thinking that come with my feeling good, as they are all proving to be really helpful at the moment. Who knows what is around the corner, but for now, I am making the most of my super powers.

Supermarket Sweep

Last Sunday I had missed my supermarket -shopping companion when Joshua was in respite but today, to make up for that, I took him to Tesco twice! The first time we had gone along with our shopping list as usual and as it was a sunny day, I had dressed him in his new cargo shorts from Tesco and I had admired how smart he looked in them. It is only when I followed him to the car, that I saw that they still had the security tag on the waist band! So on the way into the store, we had queued at the Customer Service desk to prove that we had bought, rather than stolen, them and to ask them to remove it for us. Sadly there was a queue and Joshua was eager to begin his trolley shop, so it made him frustrated in the queue and he began to kick my shins to move me on. When we finally got to the desk,  the staff explained that the tag could not be removed unless he was not wearing the shorts so I would need to bring them back another time. So now I was frustrated too as I had wasted our time.

Joshua did not really recover from that false start and he was hard work to control around the shop – kicking me and the trolley, running away, touching fellow shoppers and then lying down on the floor of the cereal aisle – he felt pretty sheepish after that, and jumped up quickly. He sat on the seating provided at the end of the till while I packed and paid for the two bags of shopping and helped me to push the trolley back to the car. A till supervisor let me know that Joshua had a security tag on his shorts and that he would set the alarm off. I was shattered by the time I got home to unpack the shopping and began to make lunch.

I decided to go back to Tesco, close to closing time, so that they might remember us and the shorts, which they did immediately and they removed the security tag, quickly. We had a couple more things to buy, so we whizzed around the store in top speed and Joshua sat beautifully while I paid. This time he had not had enough and so as we moved to leave, he sat on another bench and waved at customers as they left the shop. He mostly got a wave back and that made him happy and we were almost the last customers to leave the shop at 4 pm.

As a reward for better behaviour, on the way home, we took the dogs in the park for a run around. I  let Joshua choose which direction to walk in, he was in charge , as so often he is dragged around, but yesterday it did not matter that we walked in circles.  He loved running freely and throwing sticks for the dogs, then we headed home. My Tesco visit last weekend might have been more leisurely, but it was not as much fun either – apart from the shin kicks – and having my shopping mate with me, is the norm, thankfully, not the other way around.